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Qualitative research: Making data personal

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Numerical data can tell us a lot, and every day for the past 19 months, everyone has been inundated with numbers. How many people have tested positive for COVID-19? What proportion of Canadians have been vaccinated? While numbers are great for giving part of the story, they often can’t answer the important questions of “why” and “how”.

Qualitative research can be used to collect non-numerical data to understand or find meaning in a phenomenon of interest, culture, lived experience, or social process. Qualitative research can also be used to further explore and explain results from quantitative data and involves using open-ended questions to create in-depth, rich, contextual data.

At CHÉOS, our methodologists have vast experience in conducting qualitative studies, from investigating the overdose crisis in rural and semi-urban areas to optimizing outcomes at critical points in HIV care management. Not only do our experts continually produce invaluable insights, they also offer support to others with the collection and analysis of qualitative data and the interpretation of this information.

Read on to learn more about some notable qualitative projects led by CHÉOS experts.

NaMaSTe Diabetes Clinical Trial: Challenges, Barriers, and Facilitators for Recruitment and Retention

Dr. Nadia Khan

Alongside Dr. Tricia Tang, CHÉOS Scientist Dr. Nadia Khan led the Novel Model for South Asian Treatment in Diabetes Trial (NaMaSTe) to assess the impact of a novel, culturally tailored lifestyle and medication adherence intervention for South Asian patients with poorly controlled type 2 diabetes. In addition to understanding the impact of a new intervention, Dr. Khan was interested in analyzing the trial process itself to determine the successes and challenges in recruitment and retention of participants.

A focus group was held to learn the perspectives of research assistants involved in NaMaSTe. The conversation was guided around general recruitment and retention strategies; barriers, challenges and facilitators to recruitment and retention strategies; and physician recruitment strategies. The focus group transcript was then analyzed to identify emerging prominent themes.

The group discussion revealed that factors impacting the recruitment and retention of South Asian diabetes patients were complex, with overlapping cultural aspects intersecting with age and gender. The focus group participants highlighted ways in which the challenges were navigated, such as highlighting to potential participants that personal health could benefit their larger family system. Focus group participants also expressed barriers existed when recruiting physicians to the study, such as biased perceptions regarding South Asian patients and their ability to modify their lifestyles. These barriers can be effectively addressed through cultural competency and sensitivity training.

By considering the viewpoints of research assistants who communicate with both patient and health care provider participants, future research can be improved as we better understand the complex cultural considerations required to recruit and retain participants in research.

ACTION Project: Live donor kidney study in Vancouver

Living donor kidney transplantation is the preferred treatment for patients with kidney failure. It results in better health outcomes than dialysis and usually lasts longer than a kidney from a deceased donor. Access to living donor kidney transplantation is greatly reduced among Canadians who are marginalized due to their race or ethnicity. Research shows people in Indigenous and African, Caribbean, and Black communities have a 50 to 70 per cent lower likelihood of transplantation.

Dr. Jagbir Gill
Dr. Jagbir Gill

CHÉOS Scientist Dr. Jagbir Gill is leading the ACTION Project to address the inequities in living donor kidney transplantation among South Asian communities in B.C., while his counterparts at UHN in Toronto are studying the experiences of African, Caribbean, and Black communities in Ontario. The teams are gathering information through patient interviews and community focus groups. To date, the research has highlighted many reasons behind the disparity in access, such as linguistic barriers and concerns about systemic bias.

While it is vital to understand why access to living donor kidney transplantation is decreased among marginalized populations, it is equally important to determine how it can be addressed. ACTION continues to work with patients and community members to evaluate and revise clinical education materials and clinical pathways to culturally tailor them to address barriers to donation and transplantation. It is hoped that by doing so, access to this life-altering treatment could be improved for groups marginalized by race or ethnicity.

Patient-driven data collection and usage in chronic disease management

For chronic conditions, such as hypertension, patients must actively manage their illness by monitoring their disease, symptoms, and overall health and communicating this information to care providers. When hypertension is poorly managed, which is often the case, it can result in increased morbidity and mortality.

Dr. Khan is leading a project to determine how researchers can work with patient partners with hypertension to co-design a novel digital disease measurement tool for use by patients. The tool must incorporate patient priorities and self-identified goals in hypertension management and allow for patient-driven data collection, feedback mechanisms, and integration into clinical practice.

To achieve this, the researchers will hold focus groups with patients to determine what they need in a web-based hypertension management program. The resulting tool will be put into use at hypertension clinics and the researchers will examine if and how patients gather their data in the tool and share it with care providers in order to inform future practice.

Through working closely with patient partners, Dr. Khan expects that patients will be better informed and engaged in their care, take ownership of their data, and ultimately improve their health and wellbeing.

If you would like more information on our services and would like to book a free one-hour consultation with our qualitative experts, go to https://www.cheos.ubc.ca/services/.