Patients as Partners in Research - Part 2: Considering bias

One day in March, I sat in on a webinar from AllerGen NCE, described as the allergy, genes and environment network, based in Canada.¹ The webinar was on patient engagement in health research, and the presenter raised an interesting point about selecting patients to be included on research teams.

As I’ve shared before, I am currently a part of a research project team as the patient researcher—this research has been submitted to be included in a poster presentation at the American Thoracic Society conference in Washington, DC this May. My engagement as a patient researcher has expanded to a second study that, because of how research works, is a bit slow to get going (as with all studies, honestly!). While I am not sure the intended audience of the webinar I attended, it did get me thinking again about patient engagement in research—in particular, how patients are selected to participate in research.

The presenter, Colleen McGavin, works as a patient in the field of patient engagement in research. Among the factors she brought up regarding selecting patients to participate in research included what makes an “ideal” patient partner in research. She spoke to the need of a diverse group of patients engaged in the project: a single patient does not encompass the experiences, thoughts, feelings and opinions of all patients who share their diagnosis, never mind patients as a whole.

Bias in patient selection?

Another point, which I wrote down rapidly, is that of bias towards selection of patients who fit a specific criteria—patients who are already engaged, easy to work with, and have a solid understanding of the research, the right questions to ask, and likely have some degree of formal post-secondary education. She pointed out that patients who are less engaged will have a different emphasis and provide different input in the research process. This in itself is something I had only fleetingly thought of, but is absolutely true: in order for research to be applicable to all patients, a variety of patients should have input into how that research is planned, conducted, and disseminated.

There is a bias to selecting patients like me: after all, I am here writing about asthma, my experiences, and sharing them. I am here reading articles that are behind a paywall that I can only access because I have a university education that allows me to, as an alumni, access journals for free—nearly three years later. And I am absolutely the exception to the rule: my perspective on research is going to match my current situation—level of asthma control, triggers I am exposed to, severity of asthma, my financial situation, my work and living situation, and factors that are unique to me. These factors are 100% unique to me, and many patients will have entirely different factors weighing into how they see the world, their asthma, and the research that is currently in progress.

The "token patient" in research

This is why eradicating token patient-ism—having a single patient who is “part of the team” to fit a requirement—is SO important: because your “token patient” is not representative of the majority, even if they fit the patient engagement box your research funder is looking for. All of us bring something different to research: researchers need to consider their own bias towards who they are selecting to assist in their research. Yes, less engaged or educated patients may require more assistance or training, but that means their input has equal, if not greater, value to a patient who is perceived as "easily integrated" into the team.

This should not be a barrier in any way—if you can only recruit one patient, it is better than none. If you’re a researcher, don’t let this scare you. However, remember to consider your bias when recruiting patients to your team—it may not be easy, but it WILL be worthwhile to expand the scope and value of your research to more patients.