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Qualitative Research – a practical guide for health and social care researchers and practitioners

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Darshini Ayton, Monash University

Tess Tsindos, Monash University

Danielle Berkovic, Monash University

Copyright Year: 2023

Last Update: 2024

ISBN 13: 9780645755404

Publisher: Monash University

Language: English

Formats Available

Conditions of use.

Table of Contents

• Acknowledgement of Country
• About the authors
• Accessibility statement
• Introduction to research
• Research design
• Data collection
• Data analysis
• Writing qualitative research
• Peer review statement
• Licensing and attribution information
• Version history

Ancillary Material

About the book.

This guide is designed to support health and social care researchers and practitioners to integrate qualitative research into the evidence base of health and social care research. Qualitative research designs are diverse and each design has a different focus that will inform the approach undertaken and the results that are generated. The aim is to move beyond the “what” of qualitative research to the “how”, by (1) outlining key qualitative research designs for health and social care research – descriptive, phenomenology, action research, case study, ethnography, and grounded theory; (2) a decision tool of how to select the appropriate design based on a guiding prompting question, the research question and available resources, time and expertise; (3) an overview of mixed methods research and qualitative research in evaluation studies; (4) a practical guide to data collection and analysis; (5) providing examples of qualitative research to illustrate the scope and opportunities; and (6) tips on communicating qualitative research.

About the Contributors

Associate Professor Darshini Ayton is the Deputy Head of the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a transdisciplinary implementation researcher with a focus on improving health and social care for older Australians and operates at the nexus of implementation science, health and social care policies, public health and consumer engagement. She has led qualitative research studies in hospitals, aged care, not-for-profit organisations and for government and utilises a range of data collection methods.  Associate Professor Ayton established and is the director of the highly successful Qualitative Research Methods for Public Health short course which has been running since 2014.

Dr Tess Tsindos  is a Research Fellow with the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a public health researcher and lecturer with strong qualitative and mixed methods research experience conducting research studies in hospital and community health settings, not-for-profit organisations and for government. Prior to working in academia, Dr Tsindos worked in community care for government and not-for-profit organisations for more than 25 years. Dr Tsindos has a strong evaluation background having conducted numerous evaluations for a range of health and social care organisations. Based on this experience she coordinated the Bachelor of Health Science/Public Health Evaluation unit and the Master of Public Health Evaluation unit and developed the Evaluating Public Health Programs short course in 2022. Dr Tsindos is the Unit Coordinator of the Master of Public Health Qualitative Research Methods Unit which was established in 2022.

Dr Danielle Berkovic  is a Research Fellow in the School of Public Health and Preventive Medicine at Monash University in Melbourne, Australia. She is a public health and consumer-led researcher with strong qualitative and mixed-methods research experience focused on improving health services and clinical guidelines for people with arthritis and other musculoskeletal conditions. She has conducted qualitative research studies in hospitals and community health settings. Dr Berkovic currently provides qualitative input into Australia’s first Living Guideline for the pharmacological management of inflammatory arthritis. Dr Berkovic is passionate about incorporating qualitative research methods into traditionally clinical and quantitative spaces and enjoys teaching clinicians and up-and-coming researchers about the benefits of qualitative research.

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Research Topics & Ideas: Healthcare

100+ Healthcare Research Topic Ideas To Fast-Track Your Project

Finding and choosing a strong research topic is the critical first step when it comes to crafting a high-quality dissertation, thesis or research project. If you’ve landed on this post, chances are you’re looking for a healthcare-related research topic , but aren’t sure where to start. Here, we’ll explore a variety of healthcare-related research ideas and topic thought-starters across a range of healthcare fields, including allopathic and alternative medicine, dentistry, physical therapy, optometry, pharmacology and public health.

NB – This is just the start…

The topic ideation and evaluation process has multiple steps . In this post, we’ll kickstart the process by sharing some research topic ideas within the healthcare domain. This is the starting point, but to develop a well-defined research topic, you’ll need to identify a clear and convincing research gap , along with a well-justified plan of action to fill that gap.

If you’re new to the oftentimes perplexing world of research, or if this is your first time undertaking a formal academic research project, be sure to check out our free dissertation mini-course. In it, we cover the process of writing a dissertation or thesis from start to end. Be sure to also sign up for our free webinar that explores how to find a high-quality research topic.

Overview: Healthcare Research Topics

• Allopathic medicine
• Alternative /complementary medicine
• Veterinary medicine
• Physical therapy/ rehab
• Optometry and ophthalmology
• Pharmacy and pharmacology
• Public health
• Examples of healthcare-related dissertations

Allopathic (Conventional) Medicine

• The effectiveness of telemedicine in remote elderly patient care
• The impact of stress on the immune system of cancer patients
• The effects of a plant-based diet on chronic diseases such as diabetes
• The use of AI in early cancer diagnosis and treatment
• The role of the gut microbiome in mental health conditions such as depression and anxiety
• The efficacy of mindfulness meditation in reducing chronic pain: A systematic review
• The benefits and drawbacks of electronic health records in a developing country
• The effects of environmental pollution on breast milk quality
• The use of personalized medicine in treating genetic disorders
• The impact of social determinants of health on chronic diseases in Asia
• The role of high-intensity interval training in improving cardiovascular health
• The efficacy of using probiotics for gut health in pregnant women
• The impact of poor sleep on the treatment of chronic illnesses
• The role of inflammation in the development of chronic diseases such as lupus
• The effectiveness of physiotherapy in pain control post-surgery

Topics & Ideas: Alternative Medicine

• The benefits of herbal medicine in treating young asthma patients
• The use of acupuncture in treating infertility in women over 40 years of age
• The effectiveness of homoeopathy in treating mental health disorders: A systematic review
• The role of aromatherapy in reducing stress and anxiety post-surgery
• The impact of mindfulness meditation on reducing high blood pressure
• The use of chiropractic therapy in treating back pain of pregnant women
• The efficacy of traditional Chinese medicine such as Shun-Qi-Tong-Xie (SQTX) in treating digestive disorders in China
• The impact of yoga on physical and mental health in adolescents
• The benefits of hydrotherapy in treating musculoskeletal disorders such as tendinitis
• The role of Reiki in promoting healing and relaxation post birth
• The effectiveness of naturopathy in treating skin conditions such as eczema
• The use of deep tissue massage therapy in reducing chronic pain in amputees
• The impact of tai chi on the treatment of anxiety and depression
• The benefits of reflexology in treating stress, anxiety and chronic fatigue
• The role of acupuncture in the prophylactic management of headaches and migraines

Topics & Ideas: Dentistry

• The impact of sugar consumption on the oral health of infants
• The use of digital dentistry in improving patient care: A systematic review
• The efficacy of orthodontic treatments in correcting bite problems in adults
• The role of dental hygiene in preventing gum disease in patients with dental bridges
• The impact of smoking on oral health and tobacco cessation support from UK dentists
• The benefits of dental implants in restoring missing teeth in adolescents
• The use of lasers in dental procedures such as root canals
• The efficacy of root canal treatment using high-frequency electric pulses in saving infected teeth
• The role of fluoride in promoting remineralization and slowing down demineralization
• The impact of stress-induced reflux on oral health
• The benefits of dental crowns in restoring damaged teeth in elderly patients
• The use of sedation dentistry in managing dental anxiety in children
• The efficacy of teeth whitening treatments in improving dental aesthetics in patients with braces
• The role of orthodontic appliances in improving well-being
• The impact of periodontal disease on overall health and chronic illnesses

Tops & Ideas: Veterinary Medicine

• The impact of nutrition on broiler chicken production
• The role of vaccines in disease prevention in horses
• The importance of parasite control in animal health in piggeries
• The impact of animal behaviour on welfare in the dairy industry
• The effects of environmental pollution on the health of cattle
• The role of veterinary technology such as MRI in animal care
• The importance of pain management in post-surgery health outcomes
• The impact of genetics on animal health and disease in layer chickens
• The effectiveness of alternative therapies in veterinary medicine: A systematic review
• The role of veterinary medicine in public health: A case study of the COVID-19 pandemic
• The impact of climate change on animal health and infectious diseases in animals
• The importance of animal welfare in veterinary medicine and sustainable agriculture
• The effects of the human-animal bond on canine health
• The role of veterinary medicine in conservation efforts: A case study of Rhinoceros poaching in Africa
• The impact of veterinary research of new vaccines on animal health

Topics & Ideas: Physical Therapy/Rehab

• The efficacy of aquatic therapy in improving joint mobility and strength in polio patients
• The impact of telerehabilitation on patient outcomes in Germany
• The effect of kinesiotaping on reducing knee pain and improving function in individuals with chronic pain
• A comparison of manual therapy and yoga exercise therapy in the management of low back pain
• The use of wearable technology in physical rehabilitation and the impact on patient adherence to a rehabilitation plan
• The impact of mindfulness-based interventions in physical therapy in adolescents
• The effects of resistance training on individuals with Parkinson’s disease
• The role of hydrotherapy in the management of fibromyalgia
• The impact of cognitive-behavioural therapy in physical rehabilitation for individuals with chronic pain
• The use of virtual reality in physical rehabilitation of sports injuries
• The effects of electrical stimulation on muscle function and strength in athletes
• The role of physical therapy in the management of stroke recovery: A systematic review
• The impact of pilates on mental health in individuals with depression
• The use of thermal modalities in physical therapy and its effectiveness in reducing pain and inflammation
• The effect of strength training on balance and gait in elderly patients

Topics & Ideas: Optometry & Opthalmology

• The impact of screen time on the vision and ocular health of children under the age of 5
• The effects of blue light exposure from digital devices on ocular health
• The role of dietary interventions, such as the intake of whole grains, in the management of age-related macular degeneration
• The use of telemedicine in optometry and ophthalmology in the UK
• The impact of myopia control interventions on African American children’s vision
• The use of contact lenses in the management of dry eye syndrome: different treatment options
• The effects of visual rehabilitation in individuals with traumatic brain injury
• The role of low vision rehabilitation in individuals with age-related vision loss: challenges and solutions
• The impact of environmental air pollution on ocular health
• The effectiveness of orthokeratology in myopia control compared to contact lenses
• The role of dietary supplements, such as omega-3 fatty acids, in ocular health
• The effects of ultraviolet radiation exposure from tanning beds on ocular health
• The impact of computer vision syndrome on long-term visual function
• The use of novel diagnostic tools in optometry and ophthalmology in developing countries
• The effects of virtual reality on visual perception and ocular health: an examination of dry eye syndrome and neurologic symptoms

Topics & Ideas: Pharmacy & Pharmacology

• The impact of medication adherence on patient outcomes in cystic fibrosis
• The use of personalized medicine in the management of chronic diseases such as Alzheimer’s disease
• The effects of pharmacogenomics on drug response and toxicity in cancer patients
• The role of pharmacists in the management of chronic pain in primary care
• The impact of drug-drug interactions on patient mental health outcomes
• The use of telepharmacy in healthcare: Present status and future potential
• The effects of herbal and dietary supplements on drug efficacy and toxicity
• The role of pharmacists in the management of type 1 diabetes
• The impact of medication errors on patient outcomes and satisfaction
• The use of technology in medication management in the USA
• The effects of smoking on drug metabolism and pharmacokinetics: A case study of clozapine
• Leveraging the role of pharmacists in preventing and managing opioid use disorder
• The impact of the opioid epidemic on public health in a developing country
• The use of biosimilars in the management of the skin condition psoriasis
• The effects of the Affordable Care Act on medication utilization and patient outcomes in African Americans

Topics & Ideas: Public Health

• The impact of the built environment and urbanisation on physical activity and obesity
• The effects of food insecurity on health outcomes in Zimbabwe
• The role of community-based participatory research in addressing health disparities
• The impact of social determinants of health, such as racism, on population health
• The effects of heat waves on public health
• The role of telehealth in addressing healthcare access and equity in South America
• The impact of gun violence on public health in South Africa
• The effects of chlorofluorocarbons air pollution on respiratory health
• The role of public health interventions in reducing health disparities in the USA
• The impact of the United States Affordable Care Act on access to healthcare and health outcomes
• The effects of water insecurity on health outcomes in the Middle East
• The role of community health workers in addressing healthcare access and equity in low-income countries
• The impact of mass incarceration on public health and behavioural health of a community
• The effects of floods on public health and healthcare systems
• The role of social media in public health communication and behaviour change in adolescents

Examples: Healthcare Dissertation & Theses

While the ideas we’ve presented above are a decent starting point for finding a healthcare-related research topic, they are fairly generic and non-specific. So, it helps to look at actual dissertations and theses to see how this all comes together.

Below, we’ve included a selection of research projects from various healthcare-related degree programs to help refine your thinking. These are actual dissertations and theses, written as part of Master’s and PhD-level programs, so they can provide some useful insight as to what a research topic looks like in practice.

• Improving Follow-Up Care for Homeless Populations in North County San Diego (Sanchez, 2021)
• On the Incentives of Medicare’s Hospital Reimbursement and an Examination of Exchangeability (Elzinga, 2016)
• Managing the healthcare crisis: the career narratives of nurses (Krueger, 2021)
• Methods for preventing central line-associated bloodstream infection in pediatric haematology-oncology patients: A systematic literature review (Balkan, 2020)
• Farms in Healthcare: Enhancing Knowledge, Sharing, and Collaboration (Garramone, 2019)
• When machine learning meets healthcare: towards knowledge incorporation in multimodal healthcare analytics (Yuan, 2020)
• Integrated behavioural healthcare: The future of rural mental health (Fox, 2019)
• Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis (Gilmore, 2021)
• Mindfulness-Based Interventions: Combatting Burnout and Compassionate Fatigue among Mental Health Caregivers (Lundquist, 2022)
• Transgender and gender-diverse people’s perceptions of gender-inclusive healthcare access and associated hope for the future (Wille, 2021)
• Efficient Neural Network Synthesis and Its Application in Smart Healthcare (Hassantabar, 2022)
• The Experience of Female Veterans and Health-Seeking Behaviors (Switzer, 2022)
• Machine learning applications towards risk prediction and cost forecasting in healthcare (Singh, 2022)
• Does Variation in the Nursing Home Inspection Process Explain Disparity in Regulatory Outcomes? (Fox, 2020)

Looking at these titles, you can probably pick up that the research topics here are quite specific and narrowly-focused , compared to the generic ones presented earlier. This is an important thing to keep in mind as you develop your own research topic. That is to say, to create a top-notch research topic, you must be precise and target a specific context with specific variables of interest . In other words, you need to identify a clear, well-justified research gap.

Need more help?

If you’re still feeling a bit unsure about how to find a research topic for your healthcare dissertation or thesis, check out Topic Kickstarter service below.

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15 Comments

I need topics that will match the Msc program am running in healthcare research please

Hello Mabel,

I can help you with a good topic, kindly provide your email let’s have a good discussion on this.

Can you provide some research topics and ideas on Immunology?

Thank you to create new knowledge on research problem verse research topic

Help on problem statement on teen pregnancy

This post might be useful: https://gradcoach.com/research-problem-statement/

can you provide me with a research topic on healthcare related topics to a qqi level 5 student

Please can someone help me with research topics in public health ?

Hello I have requirement of Health related latest research issue/topics for my social media speeches. If possible pls share health issues , diagnosis, treatment.

I would like a topic thought around first-line support for Gender-Based Violence for survivors or one related to prevention of Gender-Based Violence

Please can I be helped with a master’s research topic in either chemical pathology or hematology or immunology? thanks

Can u please provide me with a research topic on occupational health and safety at the health sector

Good day kindly help provide me with Ph.D. Public health topics on Reproductive and Maternal Health, interventional studies on Health Education

may you assist me with a good easy healthcare administration study topic

May you assist me in finding a research topic on nutrition,physical activity and obesity. On the impact on children

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Search Filters

Some databases have pre-formulated search filters that are useful for retrieving relevant materials. While results are not necessarily comprehensive, they often provide a good point of departure for developing your own search strategies.

InterTASC ISSG Search Filter Resource A list of references describing filters to identify qualitative research MEDLINE (Ovid and PubMed), CINAHL, EMBASE, and PsycINFO. From Centre for Reviews and Dissemination, University of York and National Institute for Health Research, UK.

Search Strategies

Search Strategies 

• Use the following keywords to identify qualitative research. These keywprds will search the titles, abstracts and keywords of records held in the databases. Use quotations to search as a phrase:

Use controlled vocabulary

Databases use controlled vocabulary to categorize each record stored. The terms they use are known as  thesaurus terms or subject headings .  The thesaurus terms vary for each database according to their indexing system.

For example, qualitative research is indexed in PubMed as "Qualitative Research" or "Nursing Methodology Research", while in CINAHL their subject heading "Qualitative Studies" is complemented by more detailed terms, including "Phenomenological Research" and "Grounded Theory".

Tutorials for searching subject headings

Use qualitative research filters

Qualitative research filters are pre-formulated search strategies that have been constructed by librarians to help you retrieve articles in databases that deal with qualitative research. You can use the filter and then combine the results with your subject.

---------------------------------------------------------------------------------------------------------------

PubMed Topic Specific Queries

• Go to  http://www.ncbi.nlm.nih.gov/pubmed/
• Under PubMed Tools , click Topic Specific Queries
• In the left column, click   Health Services Research (HSR) Queries
• Enter your search topic
• Under Category select Qualitative Research  
• Go to PsychINFO database in Database Finder .
• Enter your topic in the search box.
• In right column, under Methodoly, MATHEMATICAL MODEL , select Qualitative study .
• Under Refine Search section on the left, limit further your search under Methodology drop down menu.

Modify your search strategy accordingly by using thesaurus terms, such as qualitative research, grounded theory, interviews, observation methods, etc.

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Qualitative Research Topics & Ideas For Students

Do you have difficulty finding a qualitative research title for your project? If you are, you need not worry because you are not alone. However, there are many unique qualitative titles you can explore for your research. You just need a few qualitative research title examples to get you started. Qualitative research is focused on data obtained through a researcher’s first-hand observations, natural setting recording, artifacts, case studies, documents, questionnaires, and interviews. The findings in qualitative research are usually non-numerical. Also, it is common in humanities and social sciences. This post provides over 100 qualitative research topics you can consider.

• The Best Qualitative Research Topics That Impress the Teacher

Exceptional Qualitative Research Topics In Social Science

Qualitative research title examples for students, fantastic examples of qualitative research titles, good topics to start for qualitative research, qualitative research topics in education, quick examples of qualitative research topics, qualitative research topics in the philippines, qualitative researches topics about humanity & social science, great choices of qualitative research title examples, qualitative research topics for students to think about, our examples of the best qualitative research topics that impress the teacher.

An excellent research topic will help you earn a good grade. Consider any example of a qualitative research title from the following options:

• The impacts of social media on physical social engagement in society
• The benefits of treating mental disorders with medication
• The effects of Gender-Based Violence on women’s social lives in rural areas
• The decline of academic pursuit in third-world countries
• Sexual workers: the stigma they experience
• How has the promotion of feminist values influenced workplaces?
• Free education: its impact in third-world countries
• What is the correlation between education and success?
• Ableism: its effects on disabled people in society
• Food insecurity in third-world nations

The topic of your research paper can influence how easily you can conduct your study and draw conclusions.

Here are fantastic examples of qualitative research titles:

• Female harm: how it is influenced by culture
• The socioeconomic impacts of free education
• The link between food insecurity and poor performance in schools
• Alcoholism among college students: a critical study
• How to mitigate child labor in our society
• The root causes of child labor in Latin America
• The stigma of living with transmissive medical conditions
• The root cause of the stigma of people living with disabilities
• How to identify depression in small children
• Signs of autism in kids below two years old

Choosing a qualitative research topic is not a task you should take lightly because it can influence your performance. Here are some noteworthy qualitative research titles examples:

• Basic patient care policies in developing nations
• The impacts of alcoholism on education
• Adult learning: what does it entail?
• Homeschooling: Is it the latest trend after the pandemic?
• Does computer literacy influence the quality of education kids enjoy?
• How to effectively teach students with learning disabilities
• The relationship between poor education systems and crime rates in third-world countries
• Student bullying: the psychological impacts
• Should high school students go through university preparedness programs?
• research writing in high schools: its significance

Are you looking for qualitative research topic examples to start your study? Below are some creative examples to consider:

• Remote tests: are they as effective as in-class tests?
• The value of social activities in academic institutions
• Why should healthcare be free in all countries?
• The implications of racist laws on society
• The reception of COVID-19 vaccines and treatments
• What is the difference between foreign policies in first-world and third-world nations?
• Racism and Colorism: what is the difference?
• Dissecting the causes of low voter turnouts in the 21 st century
• The challenges of social media on kid’s brain development
• The inclusion of black women in American politics and its impacts

When competing with several brilliant minds, a good research topic can do you greatly. The following qualitative research examples titles are a great place to start:

• Should school uniforms be discarded for high schoolers?
• The need for equal representation in global politics
• The implications of police brutality on politics
• The role of parental care in foster kids
• The distinction between Islamic values and Christian values
• The correlation between political instability and migration
• Sex trafficking and violence against women: what is the link?
• How can global governments eradicate homelessness?
• Fraternities and sororities: are they still relevant?
• The role of literature in promoting societal changes

Qualitative research is popular in the education field and other social sciences. Choose a qualitative research title example on the subject of education from the following list:

• Effectively introducing foreign languages in the high school curriculum
• How can teachers help students with disabilities improve their learning?
• The link between social activities and comprehension among students
• Research writing in high schools: is it necessary?
• How has virtual learning influenced teacher-student relationships?
• The implications of allowing smartphones in classes
• Should all schools introduce sign language lessons in their curriculum?
• Student loans: their impacts on black students
• The impacts of race on college acceptance rates
• Poverty and education: what is the link?
• Ethnic and socioeconomic causes of poor school attendance in developing worlds
• Various teaching methods and their efficiency
• Efficient teaching methods for children below two years
• Why do students perform better in humanities than in sciences?
• The difference between college acceptance and completion in most nations
• Remote learning in developing countries
• What are the best ways of approaching bullying in schools?
• How do teachers promote inequality among students?
• Does social class influence academic performance negatively or positively?
• How do teachers shape their students’ personalities?

Coming up with a qualitative research title can be hard because of the numerous subject areas and the issue of uniqueness. Therefore, we have prepared the following qualitative title examples for you:

• How to promote oral learning in classrooms
• Political instability in developing countries: its economic impacts
• The impacts of weather on social activities
• Boredom and poor-decision making: the connection
• Exploring the connection between attachment types and love languages
• Socioeconomic impacts of instability on a country
• How does social media impact the perception of reality
• Reality TV shows: are they a true reflection of reality?
• How culture applies to different age groups
• Is social media influencing the loss of cultural values?

You can base your research topic on a specific region or nation, like the Philippines. A sample qualitative research title can get you started. You can pick a sample qualitative research title from the ideas below:

• Why are so many Philippines residents migrating to America?
• The impact of politics on migration in the Philippines
• How has violence led to food insecurity in rural areas in the Philippines?
• The Philippine education system: an overview
• How cultural norms influence social activities in the Philippines
• Gender roles in the Philippines society
• How popular Filipino cultures have served as agents of social change in the nation
• The link between male dominance and GBV in the Philippines
• Barriers to clean hygiene in health centers in the Philippines
• The spread of COVID in rural areas in the Philippines

Most top performers in research subjects attribute their success to choosing the best title for qualitative research. Here are some qualitative research topics about humanities and social science to promote good performance:

• The impact of poor market rivalry on supply and demand
• The role of parents in shaping kids’ morals
• Is social media the root cause of poor societal morals?
• How does alcohol impact a person’s normal behavior?
• How often should adults engage in sporting activities?
• Children’s eating habits and their influences
• Low socioeconomic backgrounds and their impacts on self-esteem
• The effect of the COVID-19 pandemic on the world’s views on viral diseases
• How can school-going kids manage depression
• Causes of mental challenges among school-going kids

Finding a good topic for qualitative research is a critical task that requires a lot of thought and research. However, we have simplified the process with the following qualitative topic ideas:

• Pop music and erratic youth behavior: is there a link?
• How do public figures influence cultures?
• Ideas for improving healthcare in developing nations
• Possible solutions for alleviating the food crisis in developing nations
• New ways of mitigating viral diseases
• Social media trends among the elderly
• Quarantine as a mitigation approach for infectious diseases
• Promoting social justice in patriarchal societies
• Worrying trends among the young population
• Emerging marketing trends in 2023

Qualitative research for college and high school students helps improve reading, writing, and intellectual skills. Here are some qualitative research examples and topic ideas for students :

• How to detect and prevent natural disasters beforehand
• Can the whole world have the same education system?
• What is the most effective therapy for patients recuperating from brain surgery?
• Possible solutions for promoting ethical practices in telehealth
• Can addicts overcome addiction without therapy?
• The latest technology trends and their impacts?
• How can global governments promote mental health awareness?
• Have smartphones caused reduced attention spans among users?
• Sexual violence in rural areas
• The introduction of Islam in African nations

We Are Here for You

Qualitative research is an investigative analysis of intangible or inexact data, mostly non-numerical. The title of qualitative research you choose will guide your entire research process and influence its conclusions. Do you need a paper or an example of a research title qualitative topic? Our expert team is ready to write it for you.

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Lupus CAB indicates University of Michigan Community Advisory Board for Lupus Care and Research.

eAppendix 1. Eligibility Survey and Inclusion Criteria

eAppendix 2. Semi-Structured Interview Guide for Assessing the Perspectives and Experiences of Black Adults With SLE

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Yalavarthi B , Summerville J , Farahani N, et al. Recommendations for Improving Systemic Lupus Erythematosus Care From Black Adults : A Qualitative Study . JAMA Netw Open. 2023;6(10):e2340688. doi:10.1001/jamanetworkopen.2023.40688

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Recommendations for Improving Systemic Lupus Erythematosus Care From Black Adults : A Qualitative Study

• 1 Medical School, Department of Anesthesiology, University of Michigan, Ann Arbor
• 2 Medical School, Department of Internal Medicine, University of Michigan, Ann Arbor
• 3 Medical School, Department of Family Medicine, University of Michigan, Ann Arbor

Question   What opportunities are there for improving systemic lupus erythematosus (SLE) care, based on the experiences and perspectives of Black adults with SLE?

Findings   In this qualitative study including 30 Black adults with SLE, 4 main themes influencing quality of care and symptom management were identified. These themes included (1) awareness of SLE signs and symptoms before diagnosis, (2) clinician-patient interactions, (3) medication adherence and health effects, and (4) comprehensive care plans after diagnosis.

Meaning   The findings of this study suggest how experiences of racism, limited information about lupus, treatment regimens, and social risk factors may affect Black adults with SLE.

Importance   Racial inequities in incidence, morbidity, and mortality are a defining feature of systemic lupus erythematosus (SLE). Health care systems are integral to addressing these inequities. However, qualitative evidence that highlights Black SLE care experiences is limited.

Objective   To identify opportunities for improving SLE care based on the experiences and perspectives of Black adults with SLE.

Design, Setting, and Participants   In this qualitative study, an interpretive description approach was used and data were analyzed using inductive thematic analysis. Semistructured interviews with Black adults in Michigan who were diagnosed with SLE were conducted. Interviews occurred from November 2, 2021, to July 19, 2022, and data analysis occurred from May 6, 2022, to April 12, 2023.

Main Outcomes and Measures   Deidentified transcripts from the interviews were analyzed to develop themes that focused on opportunities to improve quality of care and symptom management.

Results   The participants included 30 Black adults with SLE (97% women; mean age, 41 years; range, 18-65 years). Four main themes were identified: (1) awareness of SLE signs and symptoms before diagnosis (participants emphasized delays in diagnosis and how knowledge concerning SLE could be limited in their families and communities); (2) patient-clinician interactions (participants faced discrimination in health care settings and talked about the value of coordinated and supportive health care teams); (3) medication adherence and health effects (participants experienced a range of adverse effects from medications that treat SLE and described how monitoring medication use and efficacy could inform tailored care approaches); and (4) comprehensive care plans after diagnosis (participants reported persistent pain and other symptoms despite treatment). In the context of disease management, participants emphasized the importance of behavioral change and the negative impact of social risk factors.

Conclusions and Relevance   The findings of this qualitative study suggest how limited information about SLE, experiences of racism, treatment regimens, and social risk factors may affect Black people with SLE. Future research should further engage and include Black communities within the context of treatment and intervention development to reduce racial inequities.

Systemic lupus erythematosus (SLE) is a chronic autoimmune condition with no cure that can cause a range of symptoms including skin inflammation, severe fatigue, widespread pain, and kidney disease. 1 As seen in many chronic conditions, racial inequities are also a defining feature of SLE. The incidence of SLE is 3 to 4 times higher among Black adults compared with White adults, 2 and mortality due to SLE is 2 to 4 times higher among Black patients than White patients. 3 The factors associated with these health inequities are many and likely include the influence of systemic racism on where people live and environmental exposures, which are implicated in SLE etiology, 4 as well as inequities related to health care quality. For example, Black people are nearly twice as likely to report discrimination in health care settings compared with White people. 5 The underrepresentation of Black people as participants in SLE research 6 is also a concern because it limits the ability to ensure treatment efficacy and develop care approaches that are sensitive to the needs and preferences of these individuals.

Qualitative research may help improve the quality of care that people receive through providing a detailed and nuanced picture of their experiences. 7 For example, qualitative research in rheumatoid arthritis revealed that ideal care approaches may depend on disease duration, and patients want treatment plans that value their overall wellness. 8 However, qualitative evidence that highlights Black SLE care experiences is limited.

In this study, we aimed to identify opportunities for improving care based on the experiences and perspectives of Black adults with SLE. Using a spotlight approach provides the opportunity to address inequities by developing SLE care recommendations that prioritize the perspectives of Black people, who are known to experience social disadvantages and be underrepresented in research. This aligns with the principles of community-engaged research and health equity because it centers Black voices in ways that are not possible within comparative studies. 9

We used an interpretive description design, which originated in nursing science and allowed us to identify opportunities to improve clinical care by drawing from participant experiences. 10 Data came from one-on-one semistructured interviews with Black adults with a diagnosis of SLE. The University of Michigan approved this study and designated it exempt from ongoing institutional review board review. Thus, obtaining written informed consent was not required. However, we provided individuals with a copy of the informed consent document for review with study staff via video or teleconference prior to enrollment. Participants received $25 for completing the study interview. We followed the Standards for Reporting Qualitative Research ( SRQR ) reporting guideline. 11

Reflexivity is critical for reducing bias in qualitative data collection and analysis. 12 Three preconceptions informed our work: (1) SLE is more common and more severe among Black adults than White adults, 2 , 3 , 13 (2) the unequal and unjust distribution of opportunities and resources due to public policies and social norms contributes to health inequities, 14 and (3) symptoms such as pain and fatigue may not be adequately addressed due to a lack of objective measures; instead, SLE treatment guidelines emphasize inflammation and immunologic markers. 15 Our study team included a community-engaged researcher (R.S.B.) and a clinician (J.M.K.) who interacted with members of the study population in other settings (eg, lupus awareness and education events, SLE treatment, and clinical research).

Eligible participants were adults, self-identified as Black or African American, resided in Michigan, and reported an SLE diagnosis. We recruited a convenience sample from October 26, 2021, to July 19, 2022, by posting study flyers in public places, advertising on social media, sharing information about this study with lupus advocacy organizations, and through a registry of people with SLE at an academic medical center. Interviews occurred from November 2, 2021, to July 19, 2022, and data analysis occurred from May 6, 2022, to April 12, 2023. We determined eligibility using a close-ended survey (eAppendix 1 in Supplement 1 ).

Authors with expertise in health equity (R.S.B.), qualitative research (M.D. and R.S.B.), and rheumatology (D.J.C. and J.M.K.) guided the creation of a comprehensive interview guide with input from people who have SLE or know someone with SLE that included close-ended survey questions about social risk factors and symptom management (eAppendix 2 in Supplement 1 ). We conducted semistructured interviews remotely, using video and teleconference software compliant with the Health Insurance and Portability and Accountability Act. Interview length ranged from 23 to 153 minutes. We transcribed and deidentified the interviews before analysis. We completed 30 interviews total and reached data saturation after 18 interviews, which we determined by monitoring the scope of responses during data collection.

We used an inductive thematic analysis approach, summarized in the Figure . First, we extracted demographic, social, and health-related characteristics to describe the study sample. We then open-coded the transcripts to identify salient concepts from participants’ words, and we created profiles for each participant, including memos and conceptual diagrams (eFigure in Supplement 1 ), to represent the relationship of concepts within participants. 16 Next, we used the within-person profiles to create categories that characterized the data across participants. During weekly meetings, our analysis team reviewed and discussed any analytical discrepancies that arose during category creation until we reached consensus.

After developing a set of categories for the factors that influenced quality of care and symptom management, we presented these preliminary categories to the University of Michigan Community Advisory Board for Lupus Care and Research (Lupus CAB) on November 9, 2022. The Lupus CAB included Black women with SLE and other representatives of Black communities in Michigan, which allowed our category development to reflect input from the study population and increased the trustworthiness and rigor of our research. 17 , 18 From these categories, we developed preliminary themes. To refine these preliminary themes, we generated a corresponding coding scheme and applied it to the transcripts using MAXQDA 2022 (VERBI Software). As an iterative process, we refined our themes to include any findings that conflicted with the initial coding scheme. This resulted in the final 4 main themes that we confirmed with the Lupus CAB in May 2023.

This study included 30 Black adults (97% women; mean age, 41 years; range, 18-65 years) ( Table 1 ). Among participants, 40% reported financial hardship, including food insecurity and skipping health care services to save money. All but one participant experienced fatigue. Nearly all participants reported depressive and/or anxiety symptoms (93%), and 70% reported multisite chronic pain. Participants’ first signs and symptoms of SLE before the diagnosis were headaches, muscle aches, fatigue, rash, hair loss, joint pain and swelling, light sensitivity, dizziness, lightheadedness, fever, blood clots, shortness of breath, and loss of appetite.

We developed 4 main themes that reflect opportunities to improve SLE care ( Table 2 ). Each theme includes examples with additional detail about participants’ qualitative experiences.

As participants explained the process of receiving an SLE diagnosis, some people experienced delays in diagnosis and emphasized limited knowledge concerning SLE in their families and communities. The nature of initial SLE symptoms could affect the diagnosis timeline. For some, classic SLE symptoms, such as the butterfly rash, increased the speed of diagnosis. For others, having pain and fatigue as the first signs of SLE contributed to an initial misdiagnosis. At times, diagnosis was the result of a hospitalization or multiple hospitalizations. One participant told her physician that she thought she had lupus (“They just put it on my chart that I was ‘self-diagnosed lupus.’” Participant [P]28), but the diagnosis was not official until “a couple of years after that.”

Another factor that appeared to affect the speed of diagnosis included knowledge of family history regarding SLE. While several participants talked about having a family history of SLE, this information did not always facilitate a personal diagnosis. For example, one participant’s sister was diagnosed with SLE before her, but she did not find out until after her own diagnosis years later (“I found out [my sister] had lupus [2 years before my diagnosis]. She actually kept it from the family.” P22). Two participants talked about being adopted and could not draw on their biological family health histories to inform their care.

Another important feature of this diagnosis process was the level of awareness that participants and their health care professionals had concerning SLE signs and symptoms. Often the SLE symptom and diagnosis journey starts well before people are evaluated by a rheumatologist, and many participants did not receive appropriate or timely care. One participant who waited a long time to receive the diagnosis remembers wishing she had cancer to take away the burden of not knowing. Another participant specifically highlighted the need for more awareness of SLE symptoms within their community, saying, “Make it a little bit more well-known, bring more awareness about the disease itself. It will probably help.” (P26)

This theme was characterized by participants’ descriptions of discrimination in health care settings and the value of coordinated and supportive health care teams. Participants explained that their care was affected by how clinicians treated them. For example, participants experienced racism, were labeled as drug-seeking, and had their symptoms dismissed or disbelieved by clinicians (eg, “With me being an African American woman, I have experienced going to the ER and experiencing medical bias, that medical racism in the field.” P5). When participants did not have the relationship that they wanted with their physicians, they sought care elsewhere. One participant described how being stigmatized by physicians made her hesitant to advocate for herself: “You go back and forth with trying to be an advocate for yourself, without being too pushy. You don’t want them to view you as a complainer or a drug seeker, or [the doctor thinks] I want to [get] disability. I want to work and get myself back because disability income is still not going to be the lifestyle that I wanted to establish for myself and went to school for.” (P28)

Conversely, participants explained the positive impact of physicians who took the time to explain what was going on and develop a treatment plan. Participants also described how SLE requires care from several types of health care professionals, including dermatologists, pharmacists, nutritionists, psychotherapists, internists, nephrologists, and nurse practitioners in addition to rheumatologists, and they talked about how their care was better when their health care professionals worked “in tandem” (P24) and communicated with each other.

Under this theme, participants shared how SLE medications come with challenges, such as adverse effects that affect medication adherence. For example, medications could be cost-prohibitive, especially when participants were unable to work due to SLE or when their insurance no longer covered certain prescriptions. An inability to obtain medications in the future due to cost or insurance-related restrictions was a fear for multiple participants, and for some, this altered their treatment plan (eg, “I’ve been [receiving] prednisone for 10 years. Well, 11 years. Which I’m not supposed to be [receiving] it that long. They were going to [prescribe] Benlysta, but my insurance wouldn’t cover it.” P1).

Participants described the adverse effects from receiving glucocorticoids and other prescription medications, including swelling, weight gain, osteonecrosis, glaucoma, nausea, and “going blind” (P16). At times, the adverse effects of medication reduced treatment adherence. Participants talked about skipping doses without telling their physicians or throwing medications away because of the adverse effects. Additionally, a trial-and-error approach to medication was confusing and frustrating for some people: “I can’t even explain to [the doctors] what’s been going on with me between now and the last 3 months and [they] just throw me [medications to try]. We’ll try this and see if this works. And then I’ll try the medication that caused my potassium to drop.” (P28) One participant had unique concerns about drug interactions due to taking medications for multiple conditions (“Because I have psoriasis and lupus some medications don’t work together … so, you’ve got to be really careful with the medications.” P27)

For other participants, talking about medication adherence and symptoms with health care professionals helped with tailoring their treatment plan. Despite adverse effects, achieving optimal health was a core motivation for taking prescription medications: “I don’t like medication but when I got my disease, I think it’s very essential for me to take medication because I love my body. I love my health. My health is my priority.” (P8)

In this theme, participants reported that they would benefit from comprehensive care approaches that did not focus on a single dimension of their health. For example, participants used a range of lifestyle strategies to help manage SLE, including relaxation techniques, spirituality, sun protection, nutrition, and physical activity. Participants explained how SLE could require adopting new behaviors like changing their diet (eg, “I cut out red meat, so I don’t eat pork or beef anymore. And I try not to drink alcohol too much.” P3), giving themselves permission to rest (eg, “One of the things that I’ve done is allowing myself to rest a lot more, because beforehand that wasn’t something that I did.” P4), and finding ways to reduce the impact of their symptoms, like memory problems (eg, “My brain does not store information like yours might. I have to have references. I’m a sticky note girl.” P16).

Participants described wanting information about integrative, nonpharmaceutical treatments. A participant said, “We don’t want to take [just pain medicine and steroids] …. There has to be some other form of treatment that they have to come up with.” (P4). Participants also talked about how treating pain, fatigue, depression, and anxiety was especially important to their health. This included the value of psychotherapy (eg, “When they told me that I was going to die [after receiving my lupus diagnosis], if I would have let that be it, I would have stayed in that wheelchair and I would not have probably made it. So, water your brain. Seek out therapy.” P16) and educational resources for SLE management. For example, one participant was afraid after diagnosis because of the lack of information about SLE prognosis and management: “My first reaction was that I was very scared… There wasn’t any information out there on the internet. [There wasn’t] any place that I could go, or I could call to just gain more information about it. It was just, you have lupus and that was that.” (P5)

Participants elaborated how social risk factors can affect SLE management, including food insecurity, literacy, and neighborhood walkability. For example, while some participants managed their SLE with the help of self-guided research, this may not be an option for everyone. As one person explained, “A few years ago, we had a 52% functioning illiteracy rate [in my community]. So, you can’t minimize and assume that people can read and understand.” (P11). Another participant talked about how their insurance status affected their continuity of care and where they could go for health care: “I had to find another provider and I got a different insurer now. So having that type of insurance, most providers don’t want to take you on as the patient .… The providers are limited.” (P28)

Alternatively, the impact of SLE can be minimal for those with comprehensive social support. A participant described her experience: “I do say that coming from a point of privilege. I have a great job, my husband has a great job, I have amazing benefits. I’ve never had to worry about food insecurity, or spousal abuse, or having enough money to put gas in my car so I can go to work … I’ve been exceptionally lucky and blessed in that aspect. So yeah, lupus ironically has made me healthier, I think, which is weird to say, but yeah.” (P24)

Based on semistructured interviews with Black people in Michigan who were diagnosed with SLE, we identified 4 main themes that influenced quality of care and symptom management: awareness of SLE signs and symptoms before diagnosis, patient-clinician interactions, medication adherence and health effects, and comprehensive care plans after diagnosis. This aligns with prior work, including a study that used data from a large, online forum for people with SLE and related autoimmune diseases in which participants described the harms of a delayed diagnosis, having symptoms dismissed, a desire for invested health care professionals, and valuing coordinated and multidisciplinary care. 19 Our study extends existing evidence by focusing on the perspectives of a marginalized patient population that faces inequities concerning SLE incidence, morbidity, and mortality. More specifically, our findings highlight how limited information about SLE, experiences of racism, treatment regimens, and social risk factors could be targeted to improve the quality of SLE care.

Consistent with our findings, reducing the time to diagnosis in Black populations could improve SLE prognosis and alleviate health inequities. For example, when lupus nephritis (a complication of SLE) is diagnosed before kidney insufficiency, this prevents kidney failure. 20 Kidney damage can affect over half of recently diagnosed Black patients, at a rate that is 2 times higher relative to White patients. 13 Increasing awareness of SLE and diagnostic criteria could be one approach to reducing delays, which is consistent with recommendations from the National Academy of Medicine for a range of difficult-to-diagnose conditions. 21 Clinicians in primary care and emergency medicine may especially benefit from targeted educational campaigns about SLE. This is because primary care and emergency medicine professionals are likely a first point of contact for SLE, and misdiagnosis is more common among nonrheumatologists—partly due to a dependence on a positive antinuclear antibody test. 22 Additionally, as our evidence suggests, family history for SLE may be unknown or incomplete, so it may not be a reliable resource when making decisions about diagnostic testing or referrals.

Emphasized within our data, efforts to reduce exposure to discrimination in health care are critical to improving the quality of care that Black people receive both before and after an SLE diagnosis. The expectation of experiencing discrimination can cause delays in care seeking. 23 Additionally, racism and bias are inconsistent with the Hippocratic Oath and are known to prevent treatment adherence and increase the risk of morbidity and mortality. 24

In this study, participants explained the need for more comprehensive treatment plans that sufficiently addressed all dimensions of their health. More detailed monitoring of medication adherence and symptoms over time may provide one solution. For example, glucocorticoids and biologics are the first-line of treatment for SLE inflammation and, while effective, these therapies come with many adverse effects that may prevent continued use. 25 , 26 Additionally, most of the therapeutic interventions offered to people with SLE treat inflammation, which leaves noninflammatory sources of pain and other symptoms untreated and inadequately addressed. 27 Thus, integrative, multicomponent care that uses a mix of pharmaceutical and nonpharmaceutical treatments may prove effective for SLE symptoms that do not respond to standard approaches.

There are limitations to this study. Black communities are not homogeneous, and our findings should not be generalized to all Black people with SLE. There are likely alternative and additional opportunities to better SLE care that could be identified within other populations, for example, from another state or region, or patient subgroups.

In this qualitative study with Black adults, we drew from participant experiences to identify areas for improvement in SLE care, such as preventing exposure to racism, discrimination, and bias and ensuring that people receive additional treatment as needed for their symptoms. Future research should further engage and include Black communities within the context of SLE treatment and intervention development to reduce racial inequities in SLE care and research.

Accepted for Publication: September 19, 2023.

Published: October 31, 2023. doi:10.1001/jamanetworkopen.2023.40688

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2023 Yalavarthi B et al. JAMA Network Open .

Corresponding Author: Rachel S. Bergmans, PhD, Chronic Pain & Fatigue Research Center, University of Michigan, 24 Frank Lloyd Wright Dr, Lobby M, Ste 3100, Ann Arbor, MI 48105 ( [email protected] ).

Author Contributions: Dr Bergmans had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Clauw, Kahlenberg, DeJonckheere, Bergmans.

Acquisition, analysis, or interpretation of data: Yalavarthi, Summerville, Farahani, Xiao, Yu, Aboul-Hassan, Rajgarhia, DeJonckheere, Bergmans.

Drafting of the manuscript: Yalavarthi, Bergmans.

Critical review of the manuscript for important intellectual content: All authors.

Statistical analysis: Summerville, Bergmans.

Obtained funding: Clauw, Kahlenberg, Bergmans.

Administrative, technical, or material support: Summerville, Kahlenberg, Bergmans.

Supervision: Clauw, DeJonckheere, Bergmans.

Conflict of Interest Disclosures: Dr Kahlenberg reported receiving grants from Bristol Myers Squibb and Janssen; grants and personal fees from ROME Therapeutics and Ventus Therapeutics; and personal fees from AstraZeneca, Gilead, Exo Therapeutics, Lupus Therapeutics, GlaxoSmithKline, and EMD Serano outside the submitted work. Dr Bergmans reported receiving personal fees from Tonix Pharmaceuticals Inc for consulting outside the submitted work. No other disclosures were reported.

Funding/Support: This work was supported by the US National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health under grant T32-AR07080 (R.S.B.).

Role of the Funder/Sponsor: The funding organization had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Data Sharing Statement: See Supplement 2 .

Additional Contributions: We thank the lupus patient community in Michigan. This work would not have been possible without the contributions of study participants and members of the Community Advisory Board for Lupus Care and Research, including Sharon Harris, Crystal Ford, Toya Oglesby, Tonya Jones, Shannon Hester, Tiffani Stokley, Anita Johnson, and Kathy Garland, PhD. Board members received financial compensation.

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• Published: 05 May 2024

A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access

• Vasiliki Rahimzadeh 1 ,
• Jinyoung Baek 2 ,
• Jonathan Lawson 2 &
• Edward S. Dove 3  

BMC Medical Ethics volume  25 , Article number:  51 ( 2024 ) Cite this article

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Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report findings from 13 semi-structured interviews with DAC members from around the world to identify relevant barriers and facilitators to implementing ADS for genomic data access management. Participants generally supported pilot studies that test ADS performance, for example in cataloging data types, verifying user credentials and tagging datasets for use terms. Concerns related to over-automation, lack of human oversight, low prioritization, and misalignment with institutional missions tempered enthusiasm for ADS among the DAC members we engaged. Tensions for change in institutional settings within which DACs operated was a powerful motivator for why DAC members considered the implementation of ADS into their access workflows, as well as perceptions of the relative advantage of ADS over the status quo. Future research is needed to build the evidence base around the comparative effectiveness and decisional outcomes of institutions that do/not use ADS into their workflows.

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Introduction

Genomics is among the most data-prolific scientific fields and is expected to surpass the storage needs and analytic capacities of Twitter, YouTube, and astronomy combined by as soon as 2025 [ 1 ]. To meet rising demands for genomic data and their efficient collection and use, national genomics initiatives [ 2 ] rely on largescale repositories to pool data resources and incentivize data sharing [ 3 , 4 , 5 ]. The “data commons” model has since become the flagship approach for many of these initiatives [ 6 ], and prioritizes research collaboration and data access over proprietary exclusion in the data [ 3 ]. Data access committees (DACs) are principally charged with ensuring only bona fide researchers conducting research permitted by participants’ informed consent are approved to access the data [ 7 ]. DACs are typically staffed by research compliance officers, researchers, and sometimes data security professionals. DAC members can be paid or serve as volunteers and, at a basic level, arbitrate access to data given requests meet minimum requirements for data protection and compliance. Critiques of compliance-only responsibilities and the growing appreciation of data privacy risks among the general public has raised questions about whether DACs ought to weigh in on issues of social and scientific value of the data projects [ 8 ]. Our prior empirical work [ 9 ] suggests there is debate around this scope of DAC oversight, particularly as it relates to considerations of data ethics that are traditionally the domain of institutional ethics committees.

Cheah and Piasecki, for example, propose that DACs have responsibilities to both promote data sharing and protect the interests of individuals and communities about whom the shared data relate: “data access should be granted as long as the data reuse fulfils the criterion of having even a minimal social value, and minimal risk to data subjects and their communities” [ 7 ]. In this way, DACs anchor responsible data sharing ecosystems since they govern access to and compliant use of genomic and, increasingly, other health data [ 10 , 11 , 12 ].

However, DACs may not contribute to efficient data access provisions as effectively as other review models may allow [ 13 ]. In the standard model of data access review, DACs manually review a data requester’s application and assess it against pre-defined criteria. Criteria may include appropriateness of the data requested, data use terms set by data providers, and data privacy and security requirements set by the institution and by law [ 7 ]. As with most, if not all, human-mediated activities, manual review of these criteria can be a laborious and error-prone process. For example, DACs may interpret language describing permitted data uses differently, and the terms themselves can sometimes be ambiguous [ 14 ]. Faced with this ambiguity, DACs are forced to make subjective judgments about whether requests for data access truly align with permitted data uses, if these permissions have been preserved at all. Inconsistencies in how data use terms are articulated in consent forms and subsequently interpreted and executed by DACs across the biomedical ecosystem [ 14 ] can lead to delayed and inconsistent data access decisions, and risk violating the terms by which patients or participants contributed their data in the first place.

Other steps in the data access pipeline can also contribute to research delays. Emerging research suggests there is growing inefficiency, inconsistency, and error in the manual, entirely human-mediated review of data access agreements [ 13 , 15 ] which are executed in finalizing approved data access requests. Many researchers furthermore still rely on the traditional method of copying-and-downloading data once approved. The copy-download approach multiplies security risks [ 11 ], and is quickly becoming unreasonable given the expanding size and complexities of genomic datasets [ 16 , 17 ].

Standards’ developers and software engineers have therefore sought to semi-automate three axes of data access control within cloud environments – user authentication, review of access requests, and concordance of the proposed research with the data use terms of the data requested [ 14 ]. Automated decision support (ADS) systems are a coordinated system of algorithms, software, and ontologies [ 18 ] that aid in categorizing, archiving, and/or acting on decision tasks for data access review. The Data Use Oversight System (DUOS) typifies one such automated decision support [ 19 ]. In recent beta tests, DUOS was successfully shown to concur 100% of the time with human-decided access requests [ 15 ], and also codifies 93% of genomic datasets in NIH’s dbGaP [ 20 ].

While ADS can supplement human DACs with semi-automated technical solutions, no systematic investigation has sought to characterize relevant barriers and facilitators to ADS in practice [ 21 ]. Moreover, we lack understanding of how DAC members perceive the value added by ADS, if any, on the quality and effectiveness of data access review decisions, as well as what challenges they anticipate in adopting ADS considering the myriad organizational structures within which DACs operate.

Now is an opportune time to study the implementation barriers and facilitators to using ADS solutions for data access as their development converges with large-scale data migration to the cloud that can result in near-instant data access decisions. The genomics community can learn important lessons from previous attempts at (premature) ADS implementation without purposeful stakeholder engagement in public health [ 22 ], law enforcement [ 23 ] and in clinical care [ 24 ]. In this article, we report empirical findings on the “constellation of processes” relevant for implementing ADS for genomic data access management and provide practical recommendations for institutional data stewards that are considering or have already implemented ADS in this context.

We conducted a qualitative description study that engaged prospective end users of ADS for genomic data governance to explore: What are the barriers and opportunities of implementing automated workflows to manage access requests to genomic data collections, and what effect do ADS have on DAC review quality and effectiveness? We adopted Damshroder and colleagues’ definition of implementation as the “critical gateway between an organizational decision to adopt an intervention and the routine use of that intervention” [ 25 ] in order to “study the constellation of processes intended to get an intervention into use within an organization” [ 25 ]. We applied the Consolidated Framework for Implementation Research (CFIR) to compare genomic data access processes and procedures to better understand implementation processes for automated workflows to manage genomic data access across international, publicly funded genomic data repositories. The CFIR provides a “menu of constructs” associated with five domains of effective implementation which have been rigorously meta-theorized—that is, synthesized from many implementation theories (Fig.  1 ). In addition, the CFIR provides a practical guide to systematically assess potential barriers and facilitators ahead of an innovation’s implementation (L. Damschroder et al. 2015). The CFIR is also easily customizable to unveiling bioethical issues during implementation in genomics and has been applied in prior work (Burke and Korngiebel, 2015; Smit et al., 2020).

Adapted Consolidated Framework for Implementation Research (CFIR) and associated domains (Intervention Characteristics, Individuals, Process, Inner Setting, Outer Setting) used to structure 13 qualitative interviews on the relevant factors mediating implementation of automated decision support tools for genomic data access management and sharing among publicly funded genomic data repositories worldwide

The interview guide was developed specifically for this study and is available in Supplementary Materials 2 .

Data collection

We conducted a total of 13 semi-structured interviews with 17 DAC members between 27 April and 24 August 2022. Prospective interviewees indicated their interest in being invited to a follow up interview following their participation in a previous survey published elsewhere [ 9 ]. All interviews were conducted virtually and audio/video recorded on Zoom. We used validated interview guides from the official CFIR instrument repository ( https://cfirguide.org/evaluation-design/qualitative-data/ ) to probe the barriers and opportunities of implementing ADS solutions for DAC review of data access requests. Interviews lasted between 45 and 60 min and included 29 questions adapted from the CFIR instrument to fit the ADS context (e.g. Inner Setting, Outer Setting, Intervention Characteristics etc.). The specific interview guide used is available in Supplementary Materials 2 . Interviewees were also recruited from the Data Access Committee Review Standards Working Group (DACReS WG) chaired by authors VR, JL, and ESD, as well as from an internet search of publicly funded genomic data repositories worldwide.

Data analysis

We first applied a deductive coding frame to the interview transcripts based on a framework analysis approach (Pope, Ziebland, and Mays 2000) and the publicly accessible CFIR codebook available in the Supplemental Materials 1 . To ensure the reliability of conclusions drawn, two independent reviewers (VR and JB) tested the coding schema on three transcripts until reaching a recommended interrater reliability score of 0.83 before analyzing the remaining qualitative dataset. All coding discrepancies during the coding pilot were resolved by consensus discussion.

Geographical, Institutional, and Demographic Background of Participants

41% of interviewees worked within U.S.-based DACs, while the remaining 59% of interviewees represented DACs at institutions in Canada, the U.K., Spain, Tunisia, Australia, and Japan (Table  1 ). Nearly 60% of interviewees worked at a non-profit research institute, 24% represented an academic-affiliated research institution, 12% represented a government research agency, and 6% were affiliated with a research consortium. 76% of interview participants identified as female, and 24% as male.

Opportunities for ADS

We categorized the frequency of CFIR implementation factors referenced in our interviews in Table  2 . Our findings suggest that there are three major facilitators to implementing ADS for genomic data governance: (1) external policy and need for efficient workflows, (2) institutional ability to scale the ADS, and (3) interoperability.

External policy and need for efficient workflows

Participants considered adopting ADS to comply with new data sharing mandates from research funders (e.g. National Institutes of Health) and those imposed by peer reviewed journals. The demand for and scope of compliant data access review has had a ripple effect on ethics oversight bodies [ 26 ], including DACs, as a result of these new requirements [ 9 ]. Most DAC members we engaged with currently perform their reviews manually. Members review all data access requests individually or as a committee and make decisions on each request received in the order they were received. Given the anticipated increase in the number of data access requests [ 27 ], our participants noted the reduced workload and costs associated with ADS could contribute to better review efficiencies, without a concomitant loss in review quality and risk of noncompliance with data use conditions.

We found that participants perceived that ADS could reduce DAC member workload by streamlining the intake process for data access requests and verifying that the request matched the terms of use in the original consent obtained at data collection. Indeed, participants noted the initial screening of Data Access Requests (DARs) was a common rate-limiting step in the submission to decision process. DACs often begin the review process by verifying that all necessary information is documented in the request (e.g. study purpose, datasets requested, ethics review). This step can be time-consuming because the requirements can vary depending on the researcher’s institution and the datasets they request. We requested that participants share a copy of their DAR form before, during, or after the interview to compare what information DACs typically required to process a DAR. We found the form fields as well as length of the DAR (from 3 to 18 pages) differed considerably. Our participants believed that this is where ADS could be useful by automatically flagging missing information and documents, verifying the authenticity of a requester’s identity and the submitted documents, and then sending notifications to requesters if more information is needed. As one interviewee put it:

Because one of the biggest concerns in our DAC is that sometimes it takes too much time to be read by all the nine members. … They’re institutional directors or university professors. So I think it will help. Maybe if you have 50% of the work done by an automated system, so you just have to do the 50%. I think … this will be a good motivation for them saying ‘OK’ [to implement ADS].  ‑ Participant M.

Scalability and cost effectiveness

Participants also believed ADS-enabled workflows could be scalable, cost-effective solutions to management of not just newly generated data, but also for legacy data when grant funding ends because ADS can easily store and quickly present data use conditions and audit past DAC reviews. Two interviewees discussed the challenges of finding cost effective solutions to managing legacy datasets:

Actually there are lots of costs related to data sharing, particularly if I’m sharing data from the 1990s, for example. I don’t have any money or budget anymore to prepare the data [for secondary uses]. … And similarly, when it comes to these reports [on data sharing activities], there’s no extra money for doing the work to create those reports. But we’re having to report back over assets from years, decades in fact. And there was always just a little bit of a hint ‘oh well, maybe we’ll find some money’. No, no, you have to find it out on your own.  ‑ Participant F. I mean potentially as we grow over the years, you know what’s going to happen. … we’ve also discussed some scenarios, where, for example, we find ourselves with a larger amount of requests coming in, [and] we only accept applications up to certain days and then, we open this next quarter, close it again. But there potentially could be room for automation depending on the increase in request in the coming years.  ‑ Participant A.

Retention and sustainability of human resources

Participants also discussed retention of repository staff and DAC membership as an evolving human resource factor that would motivate ADS adoption. For example, some participants shared that ADS could be helpful when DAC members or data generators leave the institution, disrupting review continuity and consistency. Unlike for large, well-funded government repositories, many DACs at smaller institutions lack human resources to ensure long-term data preservation and access management for data of increasing complexity and volume:

As the program scales, the participant diversity scales, the data diversity scales. I think it is almost impossible to see a scenario where we do not rely on some level of automation to support human decision making about what is responsible use.  ‑ Participant J.

Interoperability

According to the DAC members we interviewed, ADS tools could provide centralized, interoperable solutions to facilitate inter-organizational and international data sharing. Participants perceived that ADS could motivate use of standardized request forms, access agreements, dataset identifiers, and methods for verifying researcher identities. For example, one participant commented:

But this [ADS] will free up a lot of time in the process is it also potentially means that it will become easier for, if you’re working in a team to hand off tasks as well because you will have a single system. … Also, consistency between organizations. If we have multiple organizations take this up, it’s going to mean less lead time. [Let’s] say people take a new job in a new place. We’ll actually have some software that people will recognize and be able to use and uptake, which we’ve been trying to go towards without ethics approval processes within the hospital and health services… [standardized] systems makes it easier for actual communication between organizations on processes, because everyone kind of begins to know what’s happening.  ‑ Participant E.

(b) Barriers to implementing ADS .

Despite clear advantages of ADS for genomic data access management, our interviewees identified significant barriers to implementation within DAC workflows, including: (1) lower priority compared to more immediate governance challenges, (2) ill equipped personnel and structures within the institution, (3) costs, and (4) degree of human oversight.

Prioritization

Many participants reported that institutional leadership prioritized other competing research data needs over investing in new data governance structures (e.g. generating quality data, increasing diversity in datasets, collaborating with underrepresented groups of researchers and participants, and releasing datasets). Participants believed researchers in general understand why quality and effective review of data access is important for responsible genomic data sharing but are firstly concerned with data quality. Another suspected reason that ADS implementation ranked lower on institutional priorities was that there had not yet been a significant data incident. As one participant put it:

I don’t think that the program thinks it is a very high priority to streamline any of the [data access oversight] process. I think that it will either take something bad happening and then realizing that we need additional capacities on [DAC], or some other hiccup to really promote that need.  ‑ Participant O.

Because budgets for data governance are not always included in grants, researchers may be less motivated to invest in the additional, largely unpaid work related to data governance. Insufficient resourcing for data sharing and governance mechanisms prospectively in research study design inevitably challenge the downstream execution of data governance upon deposit of the research data once generated, according to at least one DAC member we interviewed:

We found that some people don’t prioritize [data governance] because it’s not helpful to them, because it’s not our primary function as a department. You know, we’re producing new data. That’s usually what people, researchers are doing. They’re not thinking about what happens to their old data. So, it’s not much of a priority. Having said that, research funders are getting very keen for us to use their data. So, there is that sort of tug [of war]. … If I go into a senior team meeting, you know, something else will be the priority.  ‑ Participant F.

Structural characteristics of an organization

We also found a close correlation between several structural characteristics of the institution (e.g. years in operation, number of personnel, and database size) and participants’ perceived barriers to ADS implementation. For instance, many participants served on DACs that were established within the last 1–3 years coinciding with the creation of the institution’s database. As the datasets grow, and more researchers are attracted to the resource, there is greater potential to overwhelm existing management processes. It is precisely at this early juncture that DACs would benefit from weighing their ADS options, and proactively address relevant barriers ahead of any plans for implementation. Some DAC members preferred to gain more experience with existing data access management in these early years of data release before integrating ADS “because we’re not sure how [name of participant’s country] citizens feel or consider about the automatic decision on data sharing.” Participant K.

While cost was not a primary concern for ADS implementation at well-funded big data repositories, it was a significant barrier for DAC members working at smaller repositories, individual research departments, or research programs associated with a genomics consortium who were more often supported by research grants or contracts rather than an independent funding source.

“We [data governance office] are supported through project-specific funding. … Governance ends up being a little bit of this indirectly supported component of our work and services. That has limited the ways in which we can innovate around governance. … We don’t have a huge budget.”  ‑ Participant N.

Without dedicated budget for human and material resources, some DAC members were concerned that the initial investment in ADS and significant changes to current workflows would be key issues, to say nothing of new education and training materials and updates to internal policies, among other ancillary revisions to internal workflows.

Lack of human oversight

While some DAC members were enthusiastic about improvements in efficiency and consistency of ADS, participants unanimously rejected the idea of fully automating access management: “no matter what we do with automation that I feel there always needs to be that human element who’s coming in and checking. So, there will always be that barrier to upscaling” Participant E. Other participants emphasized that prior to implementation, they would need to gauge how research participants at their own institution as well as the general public would react to ADS for data access review.

Participants were also skeptical that ADS could adequately assess complex, sensitive data reuse issues which they felt required a deep understanding of ethical, legal, and sociocultural contexts within which data were collected, used, and shared. Some DAC members reported asking data requesters to clarify their study purpose and justify their need for specific datasets in recognition of these sociocultural dimensions.

I’m also someone who thinks that it’s important to be very critical about what’s the nature of the work being done. Maybe it’s solid from a scientific point of view. But are there other concerns from other perspectives that need to be taken into account? That is partly why we have community members on the [committee], and that’s something I’m not sure can be simplified or automated.”

However, when it comes to automating anything that requires reviewing information where there might be a lot of nuances, where there might be a lot of interpretation that’s required, I’m a little bit more hesitant simply because I think to some extent you do need some room for a little bit of mulling over the information, … and I think there are some information that come through with requests, that don’t neatly fit into check boxes.  ‑ Participant B.

Overall, participants perceived that ADS tools could be well positioned to help DACs streamline data access compliance. While believed to beneficial, ADS solutions were unlikely to immediately or directly advance the research organization’s core mission (e.g. collecting quality data and driving scientific discoveries and innovations). One of the most challenging barriers to implementation is the relative low priority of, and lack of institutional investment in, data infrastructures that could adapt as the dynamics of genomic data generation and storage change over time. Participants tended to regard ADS implementation, as well as data governance workflow solutions, as a lower priority compared to regulatory compliance, investigator support, and database curation, among other competing demands on DAC member time.

Most research grants allow investigators to apply for support for data collection and analysis, but rarely establish actual governance structures needed to stand up access management services. We found that executive buy-in was a major driver for ADS support in the cases of some repositories and the lack or administrative or leadership buy in a major detractor for others, namely repositories at smaller research institutions or laboratories. Therefore, part of the challenge of making ADS adoption a higher institutional priority is convincing institutional leadership of their added value and the net benefit of investing in data governance solutions and infrastructures generally.

Delaying infrastructure upgrades has consequences for the future utility of the repository in the longer term. Some of our study participants, for example, believed researchers were drawn to their databases not because of their data access policies and practices, but because of the quality and diversity of their datasets. However, this quality-driven perspective contrasts with findings from a study of genetic researchers suggesting that ease of access is at least marginally important when choosing a database for their research [ 28 ]. We reason that repositories which invest in efficient, scalable, and compliant access decision processes are likely to attract more users to their resources than repositories which do not evolve such processes to meet the pace of data generation and higher data demand. It is also worth noting that funders have a direct role to play in accelerating the pace of data science as researchers are expected to do more with fewer resources and in less time.

Developing more streamlined workflows emerged as a primary benefit that many participants anticipated from adopting ADS. Participants were most enthusiastic about applying ADS for time consuming and tedious tasks, such as preliminary review and quality control checks for data access request forms that are needed to initiate the data access decision process. Applying ADS to facilitate these workflows could free DAC members to dedicate more time to deliberate on more substantive ethics issues raised by data access requests.

While data governance has often been considered auxiliary work, new research findings and new U.S. federal government policies, such as the National Institutes of Health Data Management and Sharing (DMS) Policy, have elevated its importance by placing additional requirements for data sharing [ 29 ]. The new DMS Policy was but one example of distinct legislative reforms that have influenced cultures of data sharing shaping DAC work, as well as the institutional practices and governance tools developed to complement this culture. To be sure, such legislative and institutional context influenced participant responses and particular implementation preparedness factors for ADS such as “structural characteristics of the organization.”

The DMS Policy will accelerate the accumulation of an enormous number of datasets. In the absence of interventions, including but not limited to ADS, the DMS Policy will significantly raise costs associated with data storage and management. We concluded from our participants that databases/repositories are frequently developed specifically to share research data generated from federal funds without attention to existing databases and other resources in mind within which to deposit their data. “Blind” database creation is often done with good intentions; however, it can inadvertently introduce myriad access pathways that make the data effectively “shared” but undiscoverable and is another issue where ADS tools could intervene. One participant’s narrative about their need to transfer legacy data from a repository facing permanent closure puts the problem of unsustainable databases in sharp relief. The participant’s example suggested that there is need for more efficient and sustainable solutions for data access management and sharing that can endure even when repositories themselves do not. Moreover, there is reasonable cause to have a contingency plan for publicly funded data shared via non-publicly supported repositories in the event the repository closes or changes in policy or personnel. Standardized ADS solutions could easily interoperate between the two types of repositories and facilitate legacy data transfer, if and when required.

Limitations

Our results should be considered in light of several methodological limitations. While geographically diverse, many of our interview participants were affiliated with DACs based at large, well-resourced research institutions. It is likely that responses and perceptions of implementation factors related to ADS would differ substantially if more DACs from low- or under-resourced institutions were represented in our sample. Our data collection design relies on self-reports of institutional data access policy and procedures. Many interview participants were aware of the Global Alliance for Genomics and Health, and the data access committee review standards we were principally involved in developing [ 30 ]. Thus, while we endeavored to create a safe, open environment for participants to share their honest views, social desirability bias related to our prior work may have influenced how participants responded. Lastly, CFIR predefines sociological constructs relevant to implementation. Our analysis was therefore limited only to those constructs covered in the framework, whereas others might have emerged inductively if we adopted an alternative analytic frame.

In this article, we reported findings from semi-structured qualitative interviews with DAC members from around the world on the relevant barriers and facilitators of implementing ADS for genomic data access management. Our findings suggest there is general support for pilot studies that test ADS performance for certain tasks in data access management workflows, such as cataloging data types, verifying user credentials, and tagging datasets for use terms. Participants indicated that ADS should supplement, but not replace, DAC member work. This sentiment was especially strong with respect to tasks that were perceived to require sensitivity and human value-judgments such as privacy protections, group harms, and study purpose. Nonetheless, our findings offer cautious optimism regarding the ways in which algorithms, software, and other machine-readable ontologies could streamline aspects of DAC decision-making while also enabling new opportunities for improving consistency and fairness in DAC decisions.

To that end, we conclude with practical recommendations for institutional data stewards that are considering or have already implemented ADS for data access management. First, repositories and institutions that support databases and other resources should prioritize infrastructural upgrades and factor them into associated budgets. Ensuring proper investment in, and human/material resource support for, these upgrades ensures the repository can help ensure its utility even as the complexity and volume of genomic and associated health datasets grow. Second, DACs should prepare to put in place today what data access management and sharing processes they foresee the repository needing tomorrow. For DAC members looking to integrate ADS or other semi-automated tools into their workflows, buy-in from executive leadership should be obtained at the earliest stages of this transition. DAC members should consider substantiating the need for semi/automated solutions with concrete trend data about the frequency of data access requests relative to the time from request to decision and extrapolate these numbers to judge what the anticipated demand for repository will be in 1, 5, and 10 years. Tracking and transparently reporting data access request volume, access decisions, and other committee operations is likewise important not just for internal purposes, but also to demonstrate responsible data stewardship in action to prospective data contributors.

Third, DACs should refrain from implementing ADS wholesale without complementary human oversight of data access request intake and decisions. Pilot testing where ADS tools can be applied to the most time-consuming tasks will require taking inventory of the inputs required for each task along the data access decision workflow. Fourth, DACs should consider what human and material resources will be needed to integrate ADS effectively. These resources include DAC member expertise, computer equipment, and software development, not to mention member education and training resources. Finally, DACs should collaborate on setting standards for how data access requests should be adjudicated and tailor ADS tools in line with these consensus criteria. There is ongoing work to this effect as part of the Ethical Provenance Subgroup of the Global Alliance for Genomics and Health (including the development of an "Ethical Provenance Toolkit"); additional representation from repositories that steward other diverse health datasets would be ideal to coordinate access management strategies across the field.

The explosion in the volume and complexity of genomic and associated health data is converging with the need to manage access more efficiently to these data. Such trends point intuitively to solutions that can help to alleviate, or at least prevent bottlenecks in the access process to preserve the scientific and social value of data generated from public investments in research. To put ADS solutions to the test, future research should compare access decisions and their outcomes between institutions who do/not use such tools for data access management; and examine whether ADS delivers on its efficiency promises and whether it liberates DAC member time previously spent addressing procedural matters – allowing more opportunities for committee deliberation on substantive ethics issues.

Data availability

Materials described in the manuscript and data supporting our findings can be made available upon request. All requests should be directed to Vasiliki Rahimzadeh, PhD at [email protected].

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Acknowledgements

The authors wish to thank members of the Data Access Committee Review Standards Working Group, and the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health for their contributions to the intellectual community that inspired this work.

This study was funded by the National Human Genome Research Institute as an Administrative Supplement grant to the AnVIL program for the Study of Bioethical Issues [U24HGO10262].

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Contributions

Authors VR, JL and ED conceptualized, designed, and carried out the study. Author JB led in the data collection and analysis and drafting of early manuscript drafts. All authors, VR, JB, JL and ED took part in writing and editing the manuscript, responding to peer reviewer comments and approved the final version.

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This study was reviewed and approved the Stanford University Institutional Review Board. All participants were informed of the purpose of the study, funding, risks and benefits at the time of invitation. Informed consent was obtained from all participants prior to the interview and participants were provided opportunities to ask any questions about the study procedures.

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All authors are members of the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health. JL is co-lead of the Data Use Ontology, leads the Data Use Oversight System and is a member of the Broad Institute Data Access Committee.

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Rahimzadeh, V., Baek, J., Lawson, J. et al. A qualitative interview study to determine barriers and facilitators of implementing automated decision support tools for genomic data access. BMC Med Ethics 25 , 51 (2024). https://doi.org/10.1186/s12910-024-01050-y

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Assisted index case testing (ICT), in which health care workers take an active role in referring at-risk contacts of people living with HIV for HIV testing services, has been widely recognized as an evidence-based intervention with high potential to increase status awareness in people living with HIV. While the available evidence from eastern and southern Africa suggests that assisted ICT can be an effective, efficient, cost-effective, acceptable, and low-risk strategy to implement in the region, it reveals that feasibility barriers to implementation exist. This study aims to inform the design of implementation strategies to mitigate these feasibility barriers by examining “assisting” health care workers’ experiences of how barriers manifest throughout the assisted ICT process, as well as their perceptions of potential opportunities to facilitate feasibility.

In-depth interviews were conducted with 26 lay health care workers delivering assisted ICT in Malawian health facilities. Interviews explored health care workers’ experiences counseling index clients and tracing these clients’ contacts, aiming to inform development of a blended learning implementation package. Transcripts were inductively analyzed using Dedoose coding software to identify and describe key factors influencing feasibility of assisted ICT. Analysis included multiple rounds of coding and iteration with the data collection team.

Participants reported a variety of barriers to feasibility of assisted index case testing implementation, including sensitivities around discussing ICT with clients, privacy concerns, limited time for assisted index case testing amid high workloads, poor quality contact information, and logistical obstacles to tracing. Participants also reported several health care worker characteristics that facilitate feasibility (knowledge, interpersonal skills, non-stigmatizing attitudes and behaviors, and a sense of purpose), as well as identified process improvements with the potential to mitigate barriers.

Conclusions

Maximizing assisted ICT’s potential to increase status awareness in people living with HIV requires equipping health care workers with effective training and support to address and overcome the many feasibility barriers that they face in implementation. Findings demonstrate the need for, as well as inform the development of, implementation strategies to mitigate barriers and promote facilitators to feasibility of assisted ICT.

Trial registration

NCT05343390. Date of registration: April 25, 2022.

Peer Review reports

Introduction

To streamline progress towards its goal of ending AIDS as a public health threat by 2030, the Joint United Nations Programme on HIV/AIDS (UNAIDS) launched a set of HIV testing and treatment targets [ 1 ]. Adopted by United Nations member states in June 2021, the targets call for 95% of all people living with HIV (PLHIV) to know their HIV status, 95% of all PLHIV to be accessing sustained antiretroviral therapy (ART), and 95% of all people receiving ART to achieve viral suppression by 2025 [ 2 ]. Eastern and southern Africa has seen promising regional progress towards these targets in recent years, and the region is approaching the first target related to status awareness in PLHIV- in 2022, 92% of PLHIV in the region were aware of their status [ 3 ]. However, several countries in the region lag behind [ 4 ], and as 2025 approaches, it is critical to scale up adoption of evidence-based interventions to sustain and accelerate progress.

Index case testing (ICT), which targets provision of HIV testing services (HTS) for sexual partners, biological children, and other contacts of known PLHIV (“index clients”), is a widely recognized evidence-based intervention used to identify PLHIV by streamlining testing efforts to populations most at risk [ 5 , 6 , 7 ]. Traditional approaches to ICT rely on passive referral, in which index clients invite their contacts for testing [ 5 ]. However, the World Health Organization (WHO) and the President’s Emergency Plan for HIV/AIDS Relief (PEPFAR) have both recommended assisted approaches to ICT [ 6 , 8 , 9 , 10 ], in which health care workers (HCWs) take an active role in referral of at-risk contacts for testing, due to evidence of improved effectiveness in identifying PLHIV compared to passive approaches [ 10 , 11 , 12 , 13 , 14 ]. As a result, there have been several efforts to scale assisted ICT throughout eastern and southern Africa in recent years [ 15 , 16 , 17 , 18 , 19 , 20 ]. In addition to evidence indicating that assisted ICT can be effective in increasing HIV testing and case-finding [ 16 , 17 , 21 , 22 , 23 , 24 ], implementation evidence [ 25 ] from the region suggests that assisted ICT can be an efficient [ 14 ], acceptable [ 5 , 13 , 15 , 18 , 20 , 21 , 26 ], cost-effective [ 27 ], and low-risk [ 21 , 22 , 24 , 28 , 29 ] strategy to promote PLHIV status awareness. However, the few studies that focus on feasibility, or the extent to which HCWs can successfully carry out assisted ICT [ 25 ], suggest that barriers exist to feasibility of effective implementation [ 18 , 19 , 20 , 30 , 31 , 32 ]. Developing informed implementation strategies to mitigate these barriers requires more detailed examination of how these barriers manifest throughout the assisted ICT process, as well as of potential opportunities to facilitate feasibility, from the perspective of the HCWs who are doing the “assisting”.

This qualitative analysis addresses this need for further detail by exploring “assisting” HCWs’ perspectives of factors that influence the feasibility of assisted ICT, with a unique focus on informing development of effective implementation strategies to best support assisted ICT delivery in the context of an implementation science trial in Malawi.

This study was conducted in the Machinga and Balaka districts of Malawi. Malawi is a country in southeastern Africa in which 7.1% of the population lives with HIV and 94% of PLHIV know their status [ 4 ]. Machinga and Balaka are two relatively densely populated districts in the southern region of Malawi [ 33 ] with HIV prevalence rates similar to the national average [ 34 ]. We selected Machinga and Balaka because they are prototypical of districts in Malawi implementing Ministry of Health programs with support from an implementing partner.

Malawi has a long-established passive ICT program, and in 2019 the country also adopted an assisted component, known as voluntary assisted partner notification, as part of its national HIV testing policy [ 32 ]. In Malawi, ICT is conducted through the following four methods, voluntarily selected by the index client: 1) passive referral, in which HCWs encourage the index client to refer partners for voluntary HTS, 2) contract referral, in which HCWs establish an informal ‘contract’ with index clients that agrees upon a date that the HCW can contact the contact clients if they have not yet presented for HTS; 3) provider referral, in which HCWs contact and offer voluntary HTS to contact clients; and 3) dual referral, in which HCWs accompany and provide support to index clients in disclosing their status and offering HTS to their partners [ 8 ]. 

While Malawi has one of the lowest rates of qualified clinical HCWs globally (< 5 clinicians per 100,000 people) [ 35 ], the country has a strong track record of shifting HTS tasks to lay HCWs, who have been informally trained to perform certain health care delivery functions but do not have a formal professional/para-professional certification or tertiary education degree, in order to mitigate this limited medical workforce capacity [ 32 , 36 ]. In Malawi, lay HCW roles include HIV Diagnostic Assistants (who are primarily responsible for HIV testing and counseling, including index case counseling) and community health workers (who are responsible for a wider variety of tasks, including index case counseling and contact tracing) [ 32 ]. Non-governmental organization implementing partners, such as the Tingathe Program, play a critical role in harnessing Malawian lay HCW capacity to rapidly and efficiently scale up HTS, including assisted ICT [ 32 , 37 , 38 , 39 ].

Study design

Data for this analysis were collected as part of formative research for a two-arm cluster randomized control trial examining a blended learning implementation package as a strategy for building HCW capacity in assisted ICT [ 40 ]. Earlier work [ 32 ] established the theoretical basis for testing the blended learning implementation package, which combines individual asynchronous modules with synchronous small-group interactive sessions to enhance training and foster continuous quality improvement. The formative research presented in this paper aimed to further explore factors influencing feasibility of the assisted ICT from the perspective of HCWs in order to inform development of the blended learning implementation package.

Prior to the start of the trial (October-December 2021), the research team conducted 26 in-depth interviews (IDIs) with lay HCWs at 14 of the 34 facilities included in the parent trial. We purposively selected different types of facilities (hospitals, health centers, and dispensaries) in both districts and from both randomization arms, as this served as a qualitative baseline for a randomized trial. Within these facilities, we worked with facility supervisors to purposively select HCWs who were actively engaged in Malawi’s ICT program from the larger sample of HCWs eligible for the parent trial (had to be at least 18 years old, employed full-time at one of the health facilities included in the parent trial, and involved in counseling index clients and/or tracing their contacts). The parent trial enrolled 306 HCWs, who were primarily staff hired by Tingathe Program to support facilities implementing Malawi’s national HIV program.

Data collection

IDIs were conducted by three trained Malawian interviewers in a private setting using a semi-structured guide. IDIs were conducted over the phone when possible ( n  = 18) or in-person at sites with limited phone service ( n  = 8). The semi-structured guide was developed for this study through a series of rigorous, iterative discussions among the research team (Additional file 1 ). The questions used for this analysis were a subset of a larger interview. The interview guide questions for this analysis explored HCWs’ experiences with assisted ICT, including barriers and facilitators to implementation. Probing separately about the processes of counseling index clients and tracing their contacts, interviewers asked questions such as “What is the first thing that comes to mind when you think of counseling index clients/tracing contacts?”, “What aspects do you [like/not like] about…?” and “What do your colleagues say about…?”. When appropriate, interviewers probed further about how specific factors mentioned by the participant facilitate or impede the ICT implementation experience.

The IDIs lasted from 60–90 min and were conducted in Chichewa, a local language in Malawi. Eleven audio recordings were transcribed verbatim in Chichewa before being translated into English and 15 recordings were directly translated and transcribed into English. Interviewers summarized each IDI after it was completed, and these summaries were discussed with the research team routinely.

Data analysis

The research team first reviewed all of the interview summaries individually and then met multiple times to discuss initial observations, refining the research question and scope of analysis. A US-based analyst (CJM) with training in qualitative analysis used an inductive approach to develop a codebook, deriving broad codes from the implementation factors mentioned by participants throughout their interviews. Along with focused examination of the transcripts, she consulted team members who had conducted the IDIs with questions or clarifications. CJM regularly met with Malawian team members (TEMM, MM, TAT) who possess the contextual expertise necessary to verify and enhance meaning. She used the Dedoose (2019) web application to engage in multiple rounds of coding, starting with codes representing broad implementation factors and then further refining the codebook as needed to capture the nuanced manifestations of these barriers and facilitators. Throughout codebook development and refinement, the analyst engaged in memoing to track first impressions, thought processes, and coding decisions. The analyst presented the codebook and multiple rounds of draft results to the research team. All transcripts and applied codes were also reviewed in detail by additional team members (MJB, DV). Additional refinements to the codebook and results interpretations were iteratively made based on team feedback.

Ethical clearance

Ethical clearance was provided by UNC’s IRB, Malawi’s National Health Sciences Research Committee, and the Baylor College of Medicine IRB. Written informed consent was obtained from all participants in the main study and interviewers confirmed verbal consent before starting the IDIs.

Participant characteristics are described in Table  1 below.

Factors influencing feasibility of assisted ICT: barriers and facilitators

Participants described a variety of barriers and facilitators to feasibility of assisted ICT, manifesting across the index client counseling and contact client tracing phases of the implementation process. Identified barriers included sensitivities around discussing ICT with clients, privacy concerns, limited time for ICT amid high workloads, poor quality contact information, and logistical obstacles to tracing. In addition to these barriers, participants also described several HCW characteristics that facilitated feasibility: ICT knowledge, interpersonal skills, positive attitudes towards clients, and sense of purpose. Barriers and facilitators are mapped to the ICT process in Fig.  1 and described in greater detail in further sections.

Conceptual diagram mapping feasibility barriers and facilitators to the ICT process

Feasibility barriers

Sensitivities around discussing ict with clients.

Participants described ICT as a highly sensitive topic to approach with clients. Many expressed a feeling of uncertainty around how open index clients will be to sharing information about their contacts, as well as how contacts will react when approached for HTS. When asked about difficult aspects of counseling index clients, many HCWs mentioned clients’ hesitance or declination to participate in assisted ICT and share their contacts. Further, several HCWs mentioned that some index clients would provide false contact information. These index client behaviors were often attributed to confidentiality concerns, fear of unwanted status disclosure, and fear of the resulting implications of status disclosure: “They behave that way because they think you will be telling other people about their status…they also think that since you know it means their life is done, you will be looking at them differently .” Populations commonly identified as particularly likely to hesitate, refuse, or provide false information included youth (described as “ shy ” “ thinking they know a lot ” and “ difficult to reveal their contacts ”) and newly diagnosed clients (“it may be hard for them to accept [their HIV diagnosis]” ). One participant suggested that efforts to pair index clients with same-sex HCWs could make them more comfortable to discuss their contacts.

When asked about the first things that come to mind when starting to trace contacts, many participants discussed wondering how they will be received by the contact and preparing themselves to approach the contact. When conducting provider or contract referral, HCWs described a variety of challenging reactions that can occur when they approach a contact for HTS- including delay or refusal of testing, excessive questioning about the identity of the index client who referred them for testing, and even anger or aggression. Particularly mentioned in the context of male clients, these kinds of reactions can lead to stress and uncertain next steps for HCWs: “I was very tensed up. I was wondering to myself what was going to happen…he was talking with anger.”

Participants also noted the unique sensitivities inherent in conducting dual referral and interacting with sexual partners of index clients, explaining that HIV disclosure can create acute conflict in couples due to perceived blame and assumptions of infidelity. They recounted these scenarios as particularly difficult to navigate, with high stakes that require high-quality counseling skills: “sometimes if you do not have good counseling the marriage happens to get to an end.” . Some participants discussed concern about index client risk of intimate partner violence (IPV) upon partner disclosure: “they think that if they go home and [disclose their HIV status], the marriage will end right there, or for some getting to a point of [being] beaten.”

Privacy concerns

Participants also reported that clients highly value privacy, which can be difficult to secure throughout the ICT process. In the facility, while participants largely indicated that counseling index clients was much more successful when conducted in a private area, many reported limited availability of private counseling space. One participant described this challenge: “ if I’m counseling an index client and people keep coming into the room…this compromises the whole thing because the client becomes uncomfortable in the end.” Some HCWs mentioned working around this issue through use of screens, “do-not-disturb” signs, outdoor spots, and tents.

Participants also noted maintaining privacy as a challenge when tracing contact clients in the field, as they sometimes find clients in a situation that is not conducive to private conversations. One participant described: “ we get to the house and find that there are 4, 5 people with our [contact client]…it doesn’t go well…That is a mission gone wrong. ” Participants also noted that HCWs are also often easily recognizable in the community due to their bikes and cars, which exacerbates the risk of compromising privacy. To address privacy challenges in the community, participants reported strategies to increase discretion, including dressing to blend in with the community, preparing an alternate reason to be looking for the client, and offering HTS to multiple people or households to avoid singling out one person.

Limited time for ICT amid high workloads

Some participants indicated that strained staffing capacity leads HCWs to have to perform multiple roles, expressing challenges in balancing their ICT work with their other tasks. As one participant described, “Sometimes it is found that you are assigned a task here at the hospital to screen anyone who comes for blood testing, but you are also supposed to follow up [with] the contacts the same day- so it becomes a problem…you fail to follow up [with] the contacts.” Some also described being the only, or one of few staff responsible for ICT: “You’re doing this work alone, so you can see that it is a big task to do it single-handedly.” The need to counsel each index client individually, as a result of confidentiality concerns, further increases workload for the limited staff assigned to this work. Further, HCWs often described contact tracing in the field as time-consuming and physically taxing, which leaves them less time and energy for counseling. Many HCWs noted the need to hire more staff dedicated to ICT work.

High workloads also resulted in shorter appointments and less time to counsel index clients, which participants reported limits the opportunity for rapport that facilitates openness or probes for detailed information about sexual partners. Participants emphasized the importance of having enough time to meaningfully engage with index clients: “For counseling you cannot have a limit to say, ‘I will talk to him for 5 min only.’ …That is not counseling then. You are supposed to stay up until…you feel that this [person] is fulfilled.” . In addition, high workload can reduce the capacity of HCWs to deliver quality counseling: “So you find that as you go along with the counseling, you can do better with the first three clients but the rest, you are tired and you do short cuts.”

High workloads also lead to longer queues, which may deter clients from coming into the clinic or cause them to leave before receiving services: “Sometimes because of shortage of staff, it happens that you have been assigned a certain task that you were supposed to do but at the same time there are clients who were supposed to be counseled. As a result, because you spent more time on the other task as a result you lose out some of the clients because you find that they have gone.” In response to long queues, several participants described ‘fast-tracking’ contact clients who come in for HTS in effort to maximize case-finding by prioritizing those who have been identified as at risk of HIV.

Poor quality contact information

Participants repeatedly discussed the importance of eliciting accurate information about a person’s sexual partners, including where, when, and how to best contact them. As one participant said, “ Once the index has given us the wrong information then everything cannot work, it becomes wrong…if he gives us full information [with] the right details then everything becomes successful and happens without a problem. ” Adequate information is a critical component of the ICT process, and incorrect or incomplete information delays or prevents communication with contact clients.

Inadequate information, which can include incorrect or incomplete names, phone numbers, physical addresses, and contextual details, can arise from a variety of scenarios. Most participants mentioned index clients providing incorrect information as a concern. This occurred either intentionally to avoid disclosure or unintentionally if information was not known. Poor quality contact information also results from insufficient probing and poor documentation, which is often exacerbated by aforementioned HCW time and energy constraints. In one participant’s words, “The person who has enlisted the contact…is the key person who can make sure that our tracing is made easy.” Participants noted the pivotal role of the original HCW who first interacts with the index client in not only eliciting correct locator information but also eliciting detailed contextual information. For example, details about a contact client’s profession are helpful to trace the client at a time when they will likely be at home. Other helpful information included nicknames, HIV testing history, and notes about confidentiality concerns.

Logistical obstacles to tracing

Some contact clients are reached by phone whereas others must be physically traced in the community. Some participants reported difficulty with tracing via phone, frequently citing network problems and lack of sufficient airtime allocated by the facility. Participants also reported that some clients were unreachable by phone, necessitating physical tracing. Physically tracing a contact client requires a larger investment of resources than phone tracing, especially when the client lives at a far distance from the clinic. Participants frequently discussed having to travel far distances to reach contact clients, an issue some saw as exacerbated by people who travel to clinics at far distances due to privacy concerns.

While most participants reported walking or biking to reach contact clients in the community, some mentioned using a motorcycle or Tingathe vehicle. However, access to vehicles is often limited and these transportation methods require additional expenses for fuel. Walking or biking was also reported to expose HCWs to inclement weather, including hot or rainy seasons, and potential safety risks such as violence.

Participants reported that traveling far distances can be physically taxing and time-consuming, sometimes rendering them too tired or busy to attend to other tasks. Frequent travel influenced HCW morale, particularly when a tracing effort did not result in successfully recruiting a contact client. Participants frequently described this perception of wasted time and energy as “ painful ”, with the level of distress often portrayed as increasing with the distance travelled. As one HCW said, “You [can] find out that he gave a false address. That is painful because it means you have done nothing for the person, you travelled for nothing.”

HCWs described multiple approaches used to strategically allocate limited resources for long distances. These approaches included waiting to physically trace until there are multiple clients in a particular area, reserving vehicle use for longer trips, and coordinating across HCWs to map out contact client locations. HCWs also mentioned provision of rain gear and sun protection to mitigate uncomfortable travel. Another approach involved allocating contact tracing to HCWs based in the same communities as the contact clients.

Feasibility facilitators

Hcw knowledge about ict.

Participants reported that HCWs with a thorough understanding of ICT’s rationale and purpose can facilitate client openness. Clients were more likely to engage with HCWs about assisted ICT if they understood the benefits to themselves and their loved ones. One HCW stated, “If the person understands why we need the information, they will give us accurate information.”

Participants also discussed the value of deep HCW familiarity with ICT procedures and processes, particularly regarding screening clients for IPV and choosing referral method. One participant described the importance of clearly explaining various referral methods to clients: “So…people come and choose the method they like…when you explain things clearly it is like the index client is free to choose a method which the contact can use for testing”. Thorough knowledge of available referral methods allows HCWs to actively engage with index clients to discuss strategies to refer contacts in a way that fits their unique confidentiality needs, which was framed as particularly important when IPV is identified as a concern. Multiple participants suggested the use of flipcharts or videos, saying these would save limited HCW time and energy, fill information gaps, and provide clients with a visual aid to supplement the counseling. Others suggested recurring opportunities for training, to continuously “refresh” their ICT knowledge in order to facilitate implementation.

HCW interpersonal skills

In addition, HCWs’ ability to navigate sensitive conversations about HIV was noted as a key facilitator of successful implementation. Interpersonal skills were mentioned as mitigating the role’s day-to-day uncertainty by preparing HCWs to engage with clients, especially newly diagnosed clients: “ I need to counsel them skillfully so that they understand what I mean regardless that they have just tested positive for HIV.”

When discussing strategies to build HCW skills in counseling index clients and tracing contact clients, participants suggested establishing regular opportunities to discuss challenges and share approaches to address these challenges: “ I think that there should be much effort on the [HCWs] doing [ICT]. For example, what do I mean, they should be having a meeting with the facility people to ask what challenges are you facing and how can we end them?”. Another participant further elaborated, saying “We should be able to share experiences with our [colleagues] so that we can all learn from one another. And also, there are other people who are really brilliant at their job. Those people ought to come visit us and see how we are doing. That is very motivating.”

HCW non-stigmatizing attitudes and behaviors

Participants also highlighted the role of empathy and non-judgement in building trust with clients: “ Put yourself in that other person’s shoes. In so doing, the counseling session goes well. Understanding that person, that what is happening to them can also happen to you. ”. Participants viewed trust-building as critical to facilitating client comfort and openness: “if they trust you enough, they will give you the right information.” Further, participants associated HCW assurance of confidentiality with promoting trust and greater information sharing: “ Also assuring them on the issue of confidentiality because confidentiality is a paramount. If there will not be confidentiality then the clients will not reveal.”

HCW sense of purpose

Lastly, several participants reported that a sense of purpose and desire to help people motivated them to overcome the challenges of delivering assisted ICT. One participant said, “ Some of these jobs are a ministry. Counseling is not easy. You just need to tell yourself that you are there to help that person. ” Many seemed to take comfort in the knowledge that their labors, however taxing, would ultimately allow people to know their status, take control of their health, and prevent the spread of HIV. Participants framed the sense of fulfillment from successful ICT implementation as a mitigating factor amidst challenges: “ If [the contact client] has accepted it then I feel that mostly I have achieved the aim of being in the health field…that is why it is appealing to me ”.

Participants described a variety of barriers to assisted ICT implementation, including sensitivities around discussing ICT with clients, privacy concerns, limited time for ICT amid high workloads, poor quality contact information, and logistical obstacles to tracing. These barriers manifested across each step of the process of counseling index clients and tracing contacts. However, participants also identified HCW characteristics and process improvements that can mitigate these barriers.

Further, participants’ descriptions of the assisted ICT process revealed the intimately interconnected nature of factors that influence feasibility of assisted ICT. Sensitivities around HIV, privacy limitations, time constraints, and HCW characteristics all contribute to the extent to which counseling index clients elicits adequate information to facilitate contact tracing. Information quality has implications for HCW capacity, as inadequate information can lead to wasted resources, including HCW time and energy, on contact tracing. The opportunity cost of wasted efforts, which increases as the distance from which the contact client lives from the clinic increases, depletes HCW morale. The resulting acceleration of burnout, which is already fueled by busy workloads and the inherent uncertainty of day-to-day ICT work, further impairs HCW capacity to effectively engage in quality counseling that elicits adequate information from index clients. This interconnectedness suggests that efforts to mitigate barriers at any step of the assisted ICT process may have the potential to ripple across the whole process.

Participants’ descriptions of client confidentiality and privacy concerns, as well as fear of consequences of disclosure, align with previous studies that emphasize stigma as a key barrier to assisted ICT [ 15 , 18 , 19 , 20 , 30 , 31 ] and the overall HIV testing and treatment cascade [ 41 ]. Our findings suggest that anticipated stigma, or the fear of discrimination upon disclosure [ 42 ], drives several key barriers to feasibility of assisted ICT implementation. Previous studies also highlight the key role of HCWs in mitigating barriers related to anticipated stigma; noting the key role of HCW ICT knowledge, interpersonal skills, and non-stigmatizing attitudes/behaviors in securing informed consent from clients for ICT, tailoring the referral strategy to minimize risk to client confidentiality and safety, building trust and rapport with the client, and eliciting accurate contact information from index clients to facilitate contact tracing [ 18 , 19 , 20 , 30 ].

Our findings also reflect previous evidence of logistical challenges related to limited time, space, and resources that can present barriers to feasibility for HCWs [ 18 , 19 , 20 , 30 , 31 ]. Participants in the current study described these logistical challenges as perpetuating HCW burnout, making it harder for them to engage in effective counseling. Cumulative evidence of barriers across different settings (further validated by this study) suggests that assisted ICT implementation may pose greater burden on HCWs than previously thought [ 7 ]. However, our findings also suggest that strategic investment in targeted implementation strategies has the potential to help overcome these feasibility barriers.

In our own work, these findings affirmed the rationale for and informed the development of the blended learning implementation package tested in our trial [ 40 , 43 ]. Findings indicated the need for evidence-based training and support to promote HCW capacity to foster facilitating characteristics. Participants discussed the value of "refresher" opportunities in building knowledge, as well as the value of learning from other’s experiences. The blended learning implementation package balances both needs by providing time for HCWs to master ICT knowledge and skills with a combination of asynchronous, digitally delivered content (which allows for continuous review as a "refresher") and in-person sessions (which allow for sharing, practicing, and feedback). Our findings also highlight the value of flexible referral methods that align with the client’s needs, so our training content includes a detailed description of each referral method process. Further, our training content emphasizes client-centered, non-judgmental counseling as our findings add to cumulative evidence of stigma as a key barrier to assisted ICT implementation [ 41 ].

In addition, participants frequently mentioned informal workarounds currently in use to mitigate barriers or offered up ideas for potential solutions to try. Our blended learning implementation package streamlines these problem-solving processes by offering monthly continuous quality improvement sessions at each facility in our enhanced arm. These sessions allow for structured time to discuss identified barriers, share ideas to mitigate barriers, and develop solutions for sustained process improvement tailored to their specific setting. Initial focus areas for continuous quality improvement discussions include use of space, staffing, allocation of airtime and vehicles, and documentation, which were identified as barriers to feasibility in the current study.

Our study provides a uniquely in-depth examination of HCWs’ experiences implementing assisted ICT, exploring how barriers can manifest and interact with each other at each step of the process to hinder successful implementation. Further, our study has a highly actionable focus on informing development of implementation strategies to support HCWs implementing assisted ICT. Our study also has limitations. Firstly, while our sole focus on HCWs allowed for deeper exploration of assisted ICT from the perspective of those actually implementing it on the ground, this meant that our analysis did not include perspectives of index or contact clients. In addition, we did not conduct sub-group analyses as interpretation of results would be limited by our small sample size.

Assisted ICT has been widely recognized as an evidence-based intervention with high promise to increase PLHIV status awareness [ 5 , 6 , 7 , 10 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 , 23 , 24 , 26 , 27 , 28 , 29 ], which is important as countries in eastern and southern Africa strive to reach global UNAIDS targets. Study findings support cumulative evidence that HCWs face a variety of feasibility barriers to assisted ICT implementation in the region; further, the study’s uniquely in-depth focus on the experiences of those doing the “assisting” enhances understanding of how these barriers manifest and informs the development of implementation strategies to mitigate these barriers. Maximizing assisted ICT’s potential to increase HIV testing requires equipping HCWs with effective training and support to address and overcome the many feasibility barriers they face in implementation. Findings demonstrate the need for, as well as inform the development of, implementation strategies to mitigate barriers and promote facilitators to feasibility of assisted ICT.

Availability of data and materials

Qualitative data on which this analysis is based, as well as data collection materials and codebooks, are available from the last author upon reasonable request. The interview guide is included as an additional file.

Abbreviations

Acquired Immunodeficiency Syndrome

Antiretroviral Therapy

Health Care Worker

Human Immunodeficiency Virus

HIV Testing Services

Index Case Testing

In-Depth Interview

Intimate Partner Violence

Institutional Review Board

President’s Emergency Plan for HIV/AIDS Relief

People Living With HIV

Joint United Nations Programme on HIV/AIDS

World Health Organization

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Acknowledgements

We are grateful to the Malawian health care workers who shared their experiences through in-depth interviews, as well as to the study team members in Malawi and the United States for their contributions.

Research reported in this publication was funded by the National Institutes of Health (R01 MH124526) with support from the University of North Carolina at Chapel Hill Center for AIDS Research (P30 AI50410) and the Fogarty International Center of the National Institutes of Health (D43 TW010060 and R01 MH115793-04). The funders had no role in trial design, data collection and analysis, decision to publish or preparation of the manuscript.

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TAT, KRS, SER, MHK, VFG, and NER contributed to overall study conceptualization, with CJM, CB, and NER leading conceptualization of the analysis presented in this study. Material preparation and data collection were performed by TEMM, MM, TAT, MC, and CK. Analysis was led by CJM with support from MJB and DV. The first draft of the manuscript was written by CJM with consultation from NER, TEMM, MM, TAT, MJB, and DV. JW provided quantitative analysis support for participant characteristics. All authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

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Navigating the “Psychedelic Renaissance”: From Research to Reality

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• Doris Payer   ORCID: orcid.org/0000-0001-9313-2587 1 ,
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The field of psychedelics is in an important era, with a significant focus on the potential role of psychedelic compounds in the treatment of mental health and substance use disorders. In 2022, a scientific research conference was held in Toronto to bring together stakeholders from a variety of disciplines and to promote dialogue and collaboration. This Special Issue includes 8 papers based on presentations from the conference, which showcase the breadth of topics that were brought forward. Included are both quantitative and qualitative works, as well as two letters to the editors which further advance these important conversations. These articles not only present the current state of research into psychedelics, but also present viewpoints about their impacts on underrepresented communities, the need to recognize the history of these compounds that extends beyond this new Western “renaissance,” and the complexities of integrating psychedelics into mainstream medicine. This Special Issue serves as both an exploration of a much-discussed topic and a reminder that collaboration can advance the field in order to harness its potential impact.

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Boehnke, K. F., Kruger, D. J., & Lucas, P. (2024). Changed substance use after psychedelic experiences among individuals in Canada . International Journal of Mental Health and Addiction  (in press).

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McCleave, C. D., Beaulieu, S., Lopez, R. et al. (2024). Traditional and indigenous perspectives on healing trauma with psychedelic plant medicines. International Journal of Mental Health and Addiction  (in press).  https://doi.org/10.1007/s11469-024-01252-w

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Doris Payer, Mary Bartram, and Brian Rush declare that they have no conflict of interest. Sukhpreet Klaire has received financial compensation from Numinus Wellness, an organization providing psychedelic-assisted psychotherapy, for work as a clinical trial investigator. Dominique Morisano owns stock in Reunion Neuroscience and Numinus. She is currently in paid contract educational roles (re: psychedelic-assisted psychotherapy) with Journey Clinical, Fluence, Psychedelics Today, California Institute of Integral Studies (nonprofit), Naropa University (non-profit), and The MIND Foundation (non-profit). She is also a paid part-time contract facilitator with Beckley Retreats.

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Qualitative study.

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• Introduction

Qualitative research is a type of research that explores and provides deeper insights into real-world problems. [1] Instead of collecting numerical data points or intervene or introduce treatments just like in quantitative research, qualitative research helps generate hypotheses as well as further investigate and understand quantitative data. Qualitative research gathers participants' experiences, perceptions, and behavior. It answers the hows and whys instead of how many or how much. It could be structured as a stand-alone study, purely relying on qualitative data or it could be part of mixed-methods research that combines qualitative and quantitative data. This review introduces the readers to some basic concepts, definitions, terminology, and application of qualitative research.

Qualitative research at its core, ask open-ended questions whose answers are not easily put into numbers such as ‘how’ and ‘why’. [2] Due to the open-ended nature of the research questions at hand, qualitative research design is often not linear in the same way quantitative design is. [2] One of the strengths of qualitative research is its ability to explain processes and patterns of human behavior that can be difficult to quantify. [3] Phenomena such as experiences, attitudes, and behaviors can be difficult to accurately capture quantitatively, whereas a qualitative approach allows participants themselves to explain how, why, or what they were thinking, feeling, and experiencing at a certain time or during an event of interest. Quantifying qualitative data certainly is possible, but at its core, qualitative data is looking for themes and patterns that can be difficult to quantify and it is important to ensure that the context and narrative of qualitative work are not lost by trying to quantify something that is not meant to be quantified.

However, while qualitative research is sometimes placed in opposition to quantitative research, where they are necessarily opposites and therefore ‘compete’ against each other and the philosophical paradigms associated with each, qualitative and quantitative work are not necessarily opposites nor are they incompatible. [4] While qualitative and quantitative approaches are different, they are not necessarily opposites, and they are certainly not mutually exclusive. For instance, qualitative research can help expand and deepen understanding of data or results obtained from quantitative analysis. For example, say a quantitative analysis has determined that there is a correlation between length of stay and level of patient satisfaction, but why does this correlation exist? This dual-focus scenario shows one way in which qualitative and quantitative research could be integrated together.

Examples of Qualitative Research Approaches

Ethnography

Ethnography as a research design has its origins in social and cultural anthropology, and involves the researcher being directly immersed in the participant’s environment. [2] Through this immersion, the ethnographer can use a variety of data collection techniques with the aim of being able to produce a comprehensive account of the social phenomena that occurred during the research period. [2] That is to say, the researcher’s aim with ethnography is to immerse themselves into the research population and come out of it with accounts of actions, behaviors, events, etc. through the eyes of someone involved in the population. Direct involvement of the researcher with the target population is one benefit of ethnographic research because it can then be possible to find data that is otherwise very difficult to extract and record.

Grounded Theory

Grounded Theory is the “generation of a theoretical model through the experience of observing a study population and developing a comparative analysis of their speech and behavior.” [5] As opposed to quantitative research which is deductive and tests or verifies an existing theory, grounded theory research is inductive and therefore lends itself to research that is aiming to study social interactions or experiences. [3] [2] In essence, Grounded Theory’s goal is to explain for example how and why an event occurs or how and why people might behave a certain way. Through observing the population, a researcher using the Grounded Theory approach can then develop a theory to explain the phenomena of interest.

Phenomenology

Phenomenology is defined as the “study of the meaning of phenomena or the study of the particular”. [5] At first glance, it might seem that Grounded Theory and Phenomenology are quite similar, but upon careful examination, the differences can be seen. At its core, phenomenology looks to investigate experiences from the perspective of the individual. [2] Phenomenology is essentially looking into the ‘lived experiences’ of the participants and aims to examine how and why participants behaved a certain way, from their perspective . Herein lies one of the main differences between Grounded Theory and Phenomenology. Grounded Theory aims to develop a theory for social phenomena through an examination of various data sources whereas Phenomenology focuses on describing and explaining an event or phenomena from the perspective of those who have experienced it.

Narrative Research

One of qualitative research’s strengths lies in its ability to tell a story, often from the perspective of those directly involved in it. Reporting on qualitative research involves including details and descriptions of the setting involved and quotes from participants. This detail is called ‘thick’ or ‘rich’ description and is a strength of qualitative research. Narrative research is rife with the possibilities of ‘thick’ description as this approach weaves together a sequence of events, usually from just one or two individuals, in the hopes of creating a cohesive story, or narrative. [2] While it might seem like a waste of time to focus on such a specific, individual level, understanding one or two people’s narratives for an event or phenomenon can help to inform researchers about the influences that helped shape that narrative. The tension or conflict of differing narratives can be “opportunities for innovation”. [2]

Research Paradigm

Research paradigms are the assumptions, norms, and standards that underpin different approaches to research. Essentially, research paradigms are the ‘worldview’ that inform research. [4] It is valuable for researchers, both qualitative and quantitative, to understand what paradigm they are working within because understanding the theoretical basis of research paradigms allows researchers to understand the strengths and weaknesses of the approach being used and adjust accordingly. Different paradigms have different ontology and epistemologies . Ontology is defined as the "assumptions about the nature of reality” whereas epistemology is defined as the “assumptions about the nature of knowledge” that inform the work researchers do. [2] It is important to understand the ontological and epistemological foundations of the research paradigm researchers are working within to allow for a full understanding of the approach being used and the assumptions that underpin the approach as a whole. Further, it is crucial that researchers understand their own ontological and epistemological assumptions about the world in general because their assumptions about the world will necessarily impact how they interact with research. A discussion of the research paradigm is not complete without describing positivist, postpositivist, and constructivist philosophies.

Positivist vs Postpositivist

To further understand qualitative research, we need to discuss positivist and postpositivist frameworks. Positivism is a philosophy that the scientific method can and should be applied to social as well as natural sciences. [4] Essentially, positivist thinking insists that the social sciences should use natural science methods in its research which stems from positivist ontology that there is an objective reality that exists that is fully independent of our perception of the world as individuals. Quantitative research is rooted in positivist philosophy, which can be seen in the value it places on concepts such as causality, generalizability, and replicability.

Conversely, postpositivists argue that social reality can never be one hundred percent explained but it could be approximated. [4] Indeed, qualitative researchers have been insisting that there are “fundamental limits to the extent to which the methods and procedures of the natural sciences could be applied to the social world” and therefore postpositivist philosophy is often associated with qualitative research. [4] An example of positivist versus postpositivist values in research might be that positivist philosophies value hypothesis-testing, whereas postpositivist philosophies value the ability to formulate a substantive theory.

Constructivist

Constructivism is a subcategory of postpositivism. Most researchers invested in postpositivist research are constructivist as well, meaning they think there is no objective external reality that exists but rather that reality is constructed. Constructivism is a theoretical lens that emphasizes the dynamic nature of our world. “Constructivism contends that individuals’ views are directly influenced by their experiences, and it is these individual experiences and views that shape their perspective of reality”. [6] Essentially, Constructivist thought focuses on how ‘reality’ is not a fixed certainty and experiences, interactions, and backgrounds give people a unique view of the world. Constructivism contends, unlike in positivist views, that there is not necessarily an ‘objective’ reality we all experience. This is the ‘relativist’ ontological view that reality and the world we live in are dynamic and socially constructed. Therefore, qualitative scientific knowledge can be inductive as well as deductive.” [4]

So why is it important to understand the differences in assumptions that different philosophies and approaches to research have? Fundamentally, the assumptions underpinning the research tools a researcher selects provide an overall base for the assumptions the rest of the research will have and can even change the role of the researcher themselves. [2] For example, is the researcher an ‘objective’ observer such as in positivist quantitative work? Or is the researcher an active participant in the research itself, as in postpositivist qualitative work? Understanding the philosophical base of the research undertaken allows researchers to fully understand the implications of their work and their role within the research, as well as reflect on their own positionality and bias as it pertains to the research they are conducting.

Data Sampling 

The better the sample represents the intended study population, the more likely the researcher is to encompass the varying factors at play. The following are examples of participant sampling and selection: [7]

• Purposive sampling- selection based on the researcher’s rationale in terms of being the most informative.
• Criterion sampling-selection based on pre-identified factors.
• Convenience sampling- selection based on availability.
• Snowball sampling- the selection is by referral from other participants or people who know potential participants.
• Extreme case sampling- targeted selection of rare cases.
• Typical case sampling-selection based on regular or average participants. 

Data Collection and Analysis

Qualitative research uses several techniques including interviews, focus groups, and observation. [1] [2] [3] Interviews may be unstructured, with open-ended questions on a topic and the interviewer adapts to the responses. Structured interviews have a predetermined number of questions that every participant is asked. It is usually one on one and is appropriate for sensitive topics or topics needing an in-depth exploration. Focus groups are often held with 8-12 target participants and are used when group dynamics and collective views on a topic are desired. Researchers can be a participant-observer to share the experiences of the subject or a non-participant or detached observer.

While quantitative research design prescribes a controlled environment for data collection, qualitative data collection may be in a central location or in the environment of the participants, depending on the study goals and design. Qualitative research could amount to a large amount of data. Data is transcribed which may then be coded manually or with the use of Computer Assisted Qualitative Data Analysis Software or CAQDAS such as ATLAS.ti or NVivo. [8] [9] [10]

After the coding process, qualitative research results could be in various formats. It could be a synthesis and interpretation presented with excerpts from the data. [11] Results also could be in the form of themes and theory or model development.

Dissemination

To standardize and facilitate the dissemination of qualitative research outcomes, the healthcare team can use two reporting standards. The Consolidated Criteria for Reporting Qualitative Research or COREQ is a 32-item checklist for interviews and focus groups. [12] The Standards for Reporting Qualitative Research (SRQR) is a checklist covering a wider range of qualitative research. [13]

Examples of Application

Many times a research question will start with qualitative research. The qualitative research will help generate the research hypothesis which can be tested with quantitative methods. After the data is collected and analyzed with quantitative methods, a set of qualitative methods can be used to dive deeper into the data for a better understanding of what the numbers truly mean and their implications. The qualitative methods can then help clarify the quantitative data and also help refine the hypothesis for future research. Furthermore, with qualitative research researchers can explore subjects that are poorly studied with quantitative methods. These include opinions, individual's actions, and social science research.

A good qualitative study design starts with a goal or objective. This should be clearly defined or stated. The target population needs to be specified. A method for obtaining information from the study population must be carefully detailed to ensure there are no omissions of part of the target population. A proper collection method should be selected which will help obtain the desired information without overly limiting the collected data because many times, the information sought is not well compartmentalized or obtained. Finally, the design should ensure adequate methods for analyzing the data. An example may help better clarify some of the various aspects of qualitative research.

A researcher wants to decrease the number of teenagers who smoke in their community. The researcher could begin by asking current teen smokers why they started smoking through structured or unstructured interviews (qualitative research). The researcher can also get together a group of current teenage smokers and conduct a focus group to help brainstorm factors that may have prevented them from starting to smoke (qualitative research).

In this example, the researcher has used qualitative research methods (interviews and focus groups) to generate a list of ideas of both why teens start to smoke as well as factors that may have prevented them from starting to smoke. Next, the researcher compiles this data. The research found that, hypothetically, peer pressure, health issues, cost, being considered “cool,” and rebellious behavior all might increase or decrease the likelihood of teens starting to smoke.

The researcher creates a survey asking teen participants to rank how important each of the above factors is in either starting smoking (for current smokers) or not smoking (for current non-smokers). This survey provides specific numbers (ranked importance of each factor) and is thus a quantitative research tool.

The researcher can use the results of the survey to focus efforts on the one or two highest-ranked factors. Let us say the researcher found that health was the major factor that keeps teens from starting to smoke, and peer pressure was the major factor that contributed to teens to start smoking. The researcher can go back to qualitative research methods to dive deeper into each of these for more information. The researcher wants to focus on how to keep teens from starting to smoke, so they focus on the peer pressure aspect.

The researcher can conduct interviews and/or focus groups (qualitative research) about what types and forms of peer pressure are commonly encountered, where the peer pressure comes from, and where smoking first starts. The researcher hypothetically finds that peer pressure often occurs after school at the local teen hangouts, mostly the local park. The researcher also hypothetically finds that peer pressure comes from older, current smokers who provide the cigarettes.

The researcher could further explore this observation made at the local teen hangouts (qualitative research) and take notes regarding who is smoking, who is not, and what observable factors are at play for peer pressure of smoking. The researcher finds a local park where many local teenagers hang out and see that a shady, overgrown area of the park is where the smokers tend to hang out. The researcher notes the smoking teenagers buy their cigarettes from a local convenience store adjacent to the park where the clerk does not check identification before selling cigarettes. These observations fall under qualitative research.

If the researcher returns to the park and counts how many individuals smoke in each region of the park, this numerical data would be quantitative research. Based on the researcher's efforts thus far, they conclude that local teen smoking and teenagers who start to smoke may decrease if there are fewer overgrown areas of the park and the local convenience store does not sell cigarettes to underage individuals.

The researcher could try to have the parks department reassess the shady areas to make them less conducive to the smokers or identify how to limit the sales of cigarettes to underage individuals by the convenience store. The researcher would then cycle back to qualitative methods of asking at-risk population their perceptions of the changes, what factors are still at play, as well as quantitative research that includes teen smoking rates in the community, the incidence of new teen smokers, among others. [14] [15]

Qualitative research functions as a standalone research design or in combination with quantitative research to enhance our understanding of the world. Qualitative research uses techniques including structured and unstructured interviews, focus groups, and participant observation to not only help generate hypotheses which can be more rigorously tested with quantitative research but also to help researchers delve deeper into the quantitative research numbers, understand what they mean, and understand what the implications are.  Qualitative research provides researchers with a way to understand what is going on, especially when things are not easily categorized. [16]

• Issues of Concern

As discussed in the sections above, quantitative and qualitative work differ in many different ways, including the criteria for evaluating them. There are four well-established criteria for evaluating quantitative data: internal validity, external validity, reliability, and objectivity. The correlating concepts in qualitative research are credibility, transferability, dependability, and confirmability. [4] [11] The corresponding quantitative and qualitative concepts can be seen below, with the quantitative concept is on the left, and the qualitative concept is on the right:

• Internal validity--- Credibility
• External validity---Transferability
• Reliability---Dependability
• Objectivity---Confirmability

In conducting qualitative research, ensuring these concepts are satisfied and well thought out can mitigate potential issues from arising. For example, just as a researcher will ensure that their quantitative study is internally valid so should qualitative researchers ensure that their work has credibility.  

Indicators such as triangulation and peer examination can help evaluate the credibility of qualitative work.

• Triangulation: Triangulation involves using multiple methods of data collection to increase the likelihood of getting a reliable and accurate result. In our above magic example, the result would be more reliable by also interviewing the magician, back-stage hand, and the person who "vanished." In qualitative research, triangulation can include using telephone surveys, in-person surveys, focus groups, and interviews as well as surveying an adequate cross-section of the target demographic.
• Peer examination: Results can be reviewed by a peer to ensure the data is consistent with the findings.

‘Thick’ or ‘rich’ description can be used to evaluate the transferability of qualitative research whereas using an indicator such as an audit trail might help with evaluating the dependability and confirmability.

• Thick or rich description is a detailed and thorough description of details, the setting, and quotes from participants in the research. [5] Thick descriptions will include a detailed explanation of how the study was carried out. Thick descriptions are detailed enough to allow readers to draw conclusions and interpret the data themselves, which can help with transferability and replicability.
• Audit trail: An audit trail provides a documented set of steps of how the participants were selected and the data was collected. The original records of information should also be kept (e.g., surveys, notes, recordings).

One issue of concern that qualitative researchers should take into consideration is observation bias. Here are a few examples:

• Hawthorne effect: The Hawthorne effect is the change in participant behavior when they know they are being observed. If a researcher was wanting to identify factors that contribute to employee theft and tells the employees they are going to watch them to see what factors affect employee theft, one would suspect employee behavior would change when they know they are being watched.
• Observer-expectancy effect: Some participants change their behavior or responses to satisfy the researcher's desired effect. This happens in an unconscious manner for the participant so it is important to eliminate or limit transmitting the researcher's views.
• Artificial scenario effect: Some qualitative research occurs in artificial scenarios and/or with preset goals. In such situations, the information may not be accurate because of the artificial nature of the scenario. The preset goals may limit the qualitative information obtained.
• Clinical Significance

Qualitative research by itself or combined with quantitative research helps healthcare providers understand patients and the impact and challenges of the care they deliver. Qualitative research provides an opportunity to generate and refine hypotheses and delve deeper into the data generated by quantitative research. Qualitative research does not exist as an island apart from quantitative research, but as an integral part of research methods to be used for the understanding of the world around us. [17]

• Enhancing Healthcare Team Outcomes

Qualitative research is important for all members of the health care team as all are affected by qualitative research. Qualitative research may help develop a theory or a model for health research that can be further explored by quantitative research.  Much of the qualitative research data acquisition is completed by numerous team members including social works, scientists, nurses, etc.  Within each area of the medical field, there is copious ongoing qualitative research including physician-patient interactions, nursing-patient interactions, patient-environment interactions, health care team function, patient information delivery, etc. 

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Disclosure: Steven Tenny declares no relevant financial relationships with ineligible companies.

Disclosure: Janelle Brannan declares no relevant financial relationships with ineligible companies.

Disclosure: Grace Brannan declares no relevant financial relationships with ineligible companies.

This book is distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ), which permits others to distribute the work, provided that the article is not altered or used commercially. You are not required to obtain permission to distribute this article, provided that you credit the author and journal.

• Cite this Page Tenny S, Brannan JM, Brannan GD. Qualitative Study. [Updated 2022 Sep 18]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-.

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