While pursuing my PhD in medical anthropology at Simon Fraser University, I spent two years in Ghana critically analysing how HIV prevention programs are monitored and evaluated based on a globally standardised process for determining a program’s success.
This experience deepened my curiosity and fascination with understanding how and why critical decisions about public health and healthcare programs are made without engaging with community stakeholders — those served by these research initiatives. However, the academic focus of my PhD and its limitations in exploring this aspect of research policy was unsettling. This changed when I was given the opportunity to start a postdoctoral fellowship with CTN+, which offered me a chance to conduct research in collaboration with People Living with HIV (PLWH) under the mentorship of Dr. Catherine Worthington at the University of Victoria and Dr. Robert Hogg at the BC Centre for Excellence in HIV/AIDS.
The Meaningful Involvement of People Living with HIV in Administrative Health Data Research
Since the beginning of the HIV/AIDS epidemic, active participation of PLWH has been pivotal in shaping global HIV research, and its success has promoted community-based participatory research (CBPR) in other areas of health research.
Yet HIV research that is based on administrative health data has traditionally excluded community participation. Administrative health data is typically generated through individual encounters with the health care system (through physician visits, diagnostic procedures, and hospital admissions and prescription receipts). This numeric data is often anonymized and used by researchers to study patterns of diseases, health care delivery, and treatment effectiveness.
Embedding community participation in building administrative health data can help researchers define health care priorities in ways that reflect the needs of the communities they seek to serve. People who experience the everyday realities of living with HIV can uncover questions, patterns, interpretations, and limitations of statistical models used in administrative health data research that otherwise might not be understood by epidemiologists and computational scientists.
Administrative data research necessitates a renegotiation of the role of community members (also known as peer researchers). This is because in traditional community-based participatory research, peer researchers are involved from the very beginning to the end, which is not entirely possible in administrative data research because routinely collected health data are not typically collected for research purposes, and the opportunity for research collaboration emerges only after data collection.
Thus, administrative data traditionally limits peer researchers’ ability to shape the conceptualization of research and data collection, including who gets asked, what gets asked, and how. Given this context, figuring out what the meaningful involvement of people living with HIV in administrative data can and should look like is a goal of our work.
My postdoctoral project is focused on supporting a group of peer researchers to lead an administrative data research project, and to study our process to build a framework, complemented by academic and practical tools that can be used to boost community engagement in administrative data research.
Cardiovascular Disease, HIV, and a Focus on Strengths
I’m honoured to be part of a research team that includes peer researchers (older adults and long-term survivors living with HIV), epidemiologists, data scientists, social scientists and HIV clinicians. We’re currently focusing on examining the recurrence of cardiovascular (CVD) events like heart attack and stroke among PLWH compared to people living without HIV in BC. This is because cardiovascular health stood out to peer researchers as an individual and community priority. Additionally, cardiovascular disease is a notable cause of death among people living with HIV over the age of 55.
In our project, we are using administrative health data collected between 1992 and 2020 from across BC to investigate the incidence rates of people living with HIV who have had a cardiovascular event, as well as survival rates after the first CVD event in comparison to people without HIV in BC.
While recent studies use a deficit-based approach that focuses on negative factors like increased risk of CVD and higher rates of incidence and mortality when compared to people without HIV, our strength-based approach focuses on “recurrence-free survival” — survival after a cardiovascular event without experiencing another CVD event. Using this approach will enable us to focus on protective factors along with risks, such as access to HIV care, to fill the gaps in Canadian research about the recurrence of CVD events in people living with HIV, with the ultimate goal of improving cardiovascular outcomes.
Building a Framework and Exploring the Effectiveness of Research Processes
At the same time, we’re reflecting on and analyzing our research processes through collective participant observation and group dialogue to help determine effective ways to authentically engage people with lived/living experience in administrative data research. Our work follows the Meaningful Involvement of People living with HIV/AIDS (MIPA) and Community-Based Participatory Research (CBPR) guidelines. We’re also exploring the potential and challenges of community-led administrative health data research. We hope the documents and tools we develop based on our experience will encourage and guide researchers and community members to engage in administrative data research across various research fields.
It’s been so interesting to learn from peer researchers how and why their lived and living experiences do and do not align with the numeric administrative data, and it’s been exciting to learn how peer researchers’ critiques of the data, insights, and experiences can, together with a supporting team, ideally harness and repurpose routinely collected data. I’ve loved helping bring together very diverse people through this project and gaining deep friendships in the process.
For more information about this project, called The HIV and Eng/aging Project, please check out our website.
Looking ahead
This project has inspired a desire among our team to conduct a qualitative project to deepen our understanding of recurrence-free survival of people living with HIV in BC. By talking to a wide variety of community members, we can gain valuable perspectives that can be interpreted alongside the existing numeric administrative data. We hope to help make this a reality in the near future.
My CTN+ fellowship has helped me to realize my career goal to become a community-based HIV researcher. I also hope to continue working within the social study of health science, critiquing scientific knowledge systems for the purpose of making positive change in the ways health is known and addressed, particularly for communities affected by HIV.
