Health research often relies on numbers and statistics to tell a story—but without patient input, critical insights can be missed. That’s why the Maritime SPOR SUPPORT Unit (MSSU) is committed to embedding Patient/Public Partners in research projects, where their perspectives ensure research is relevant to patients.
Our provincial data centres also engage Patient/Public Partners on their data access committees (DAC). While the primary role of the DACs focuses on privacy and ethics—reviewing data access requests to ensure only the data necessary for a study is released—these committees also create opportunities to advise researchers on making their future studies more patient-oriented.
Ben McVicker, who recently stepped down as an MSSU Patient/Public Partner on the Health Data Nova Scotia Data Access Committee, played a key role on this committee for the past two years.
In this interview, Ben reflects on his experience and how he shared valuable input on the importance of involving patients early in the research process.
What is your role on the committee – any specific projects, topics that were of particular interest?
My role on the committee is to draw from my experience as a patient to provide feedback on research projects that may have been overlooked by the investigators. A recurring aspect of researchers’ proposals that stands out to me is how they address the time frame of the health data they plan to reference. The projects often extend into the years of the COVID-19 pandemic without noting how patients’ experiences were impacted by the severity of waves and their impacts on our healthcare system. At the time the pandemic started, I had begun attending an intensive four days per week outpatient program that was paused and gradually developed into one of shorter online meetings. Could data covering the years 2017 to 2022 on a related topic accurately convey its findings without making note of the time points for analysis? I mentioned the draft survey of social-economic factors’ that impact patients’ ability to remain at home for palliative care. Well, among COVID-19’s many impacts were the suspension of community programs for patients with Alzheimer’s Disease and the virus’ impact on the availability of PCWs who visited their homes. It placed greater responsibility for care placed on friends or family without professional experience.
I’m glad to bring a voice to the DAC that can encourage researchers to avoid treating health data simply as numbers, and to consider how variables affecting patients’ quality of life on a measurable scale can be factored into their analysis.
Ben McVicker, MSSU Patient/Public Partner
Why is it important for patients/public to have a voice in how their health data is used?
Too often, health data is used merely for numbers and tables – which are valuable but can at times overlook how nuances such as social-economic status can skew research outcomes, and patient/public partners can help avoid such oversights. I recall one project where the Data Access Committee (DAC) reviewed a draft survey that was to be issued to patients and families who utilize at-home palliative care. I spent two years as a live-in caregiver and something that stood out to me was that its questions of accessibility to a walk-in-clinic or ER assumed that one could drive to the location. Neither I nor the patient had a driver’s license, so I suggested that an additional box be added to the questionnaire to include those in our situation. I think it’s more helpful than if a respondent answered ‘None of the above’ or left the question blank. Another aspect of gathering health data that I’d like to see us have greater input on is the drafting of letters of informed consent. Some of the ones that have gone unchanged since the original draft for long-term projects can come off as quite condescending toward patients and likely impact the number of respondents.
How can patient engagement help ensure data is used in a way that benefits the community?
The inclusion of patients and public partners as members of the Data Access Committee and similar organizations in healthcare research is an excellent means of setting the ground for better knowledge translation. One of the most encouraging studies I recall reviewing as part of DAC examined cystic fibrosis patients’ accessibility to specialized health clinics in Nova Scotia. The research team made a point of highlighting that capturing patients’ input was key to correctly interpreting and disseminating research findings, and they were to be involved in project design and presentations. I had attended the first International Congress on Academic Medicine in Montreal as a delegate for patients and encouraged the team to consider presenting their findings at the next one. By chance, this year’s congress will take place in Halifax.
What would help build more trust between patients and researchers when it comes to data sharing?
I like the idea of developing training modules for researchers and patient/public partners that have some overlapping points, for improved understanding of each other’s concerns when it comes to health data. And continuing to work on greater inclusion of patients in the development of research projects will be greatly beneficial. Last year the CIHR Institute of Genetics recruited some patients affected by rare diseases to join a peer-review committee for grant proposals. Among the themes discussed was the use of health data to develop large language models (LLMs) aimed at improving diagnoses based on electronic medical records. It was an interesting and beneficial discussion between patients and research experts.
Interested in joining the Health Data Nova Scotia Data Access Committee? Check out our current opening for a Patient/Public Partner.