Patients as Research Partners
While researchers have the knowledge to develop studies or experiments, patients can contribute expertise through their lived experiences, adding value to science.
Bryn Robinson, PhD
Think back to when you were in school, sitting in a science class or lab. Do you remember how you were taught to find topics to explore and study further?
In science courses, we’re typically instructed to find ideas for research projects by observing the world around us. We’re told to read previous studies to see what has (or has not) been done. We’re taught to ask questions: Why did this happen? Can we find a solution for this problem?Perhaps other researchers missed a piece of the puzzle that you have the ability to now study. Maybe you have a different way of collecting the data to evaluate the hypothesis being tested.
But if your interest is in changing healthcare policy or practice, how do we know that we are asking the right questions? There is one missing piece of the research process that we didn’t discuss in the classroom, but it can provide us with rich information.
We can ask the patients what they think is important.
What is Patient-Oriented Research?
To improve healthcare and the research done within the system, you need to have patients, family members or caregivers affected by the system as part of your research team. Patient-oriented research is a buzzword that has gained considerable interest globally, although countries vary in their specific definition of what “patient-oriented” means. In Canada, the federal government defines it as “engaging patients, their caregivers, and families as partners in the research process.” Instead of having a patient join a research study as a participant—where they might fill out questionnaires, take a new medicine, or give samples of their blood for study—the patient is meaningfully collaborating with you.
In other words, rather than being a passive participant in the study, they’re an active team member.
What Does Patient Engagement Look Like in Practice?
Patient partners can provide oversight on a project, set priorities for which research question should first be studied, develop questions to ask in the study, or even conduct part of the research and write it up. For example, you can ask patient partners whether or not the data make sense, given their experience living with a disease.
For those interested in improving science communication, patient partners can provide great advice on where, when and how to communicate information. While study results are typically shared in journal articles or at conferences, you may find that patients also prefer infographics, blog posts, or video clips on social media. It also gives you the opportunity to influence what is shared about your work directly with the people it impacts—all while flexing some creative muscles and learning new communication skills, too.
The extent of what you ask patient partners to do really depends on the project and its resources. You can ask partners to join a larger committee to oversee your research, or you can ask for help on a specific project. Your only limit is you and your partner’s time and your willingness to invite new people into the research space.
To begin engaging patients in your research, the first step is bringing potential partners on board as early as you can, so they can help shape the study as soon as possible. Each province and territory has a Strategy for Patient-Oriented Research (SPOR) SUPPORT unit that provides researcher consultations, tools and templates for you to use to begin planning. For example, the BC SUPPORT Unit created a “menu” for research teams that provides considerations for the research process.
And if you’re a patient, family member or caregiver interested in getting involved in a research study, to help you start a conversation about patient engagement, the Saskatchewan SPOR SUPPORT Unit created an onboarding guide for patient-oriented research teams. It begins with a series of questions to ask as a starting point in building a meaningful collaboration.
Whose Priorities are Driving Research?
When we do research in healthcare, it can be passionate and immersive. We hear stories that impact us and potentially disrupt what we know and thought we knew about healthcare and society. But, even as immersed as we can all be in our work, we do go home at the end of the day to likely a different experience. Our reality changes for a while, until we put our researcher and clinician hats back on.
Because of that, it can never be the same as living with an illness 24 hours per day, seven days per week.
There is so much we can do to begin telling different stories in addition to the ones that we already can and do tell through our clinical and research work. It means having patients join us as partners in the development. It means conducting and sharing health research, so that we all benefit from research that is more aligned to patients’ priorities, as much as research already aligns with the priorities of other researchers and policy-makers.
It's the difference between research “on” versus research “with.”
References:
[1] Canadian Institutes for Health. Strategy for patient-oriented research. 2022. CIHR: Ottawa.
[2] Canadian Institutes for Health. Patient engagement. 2022. CIHR: Ottawa.
[3] Bird M, Ouellette C, Whitmore C, et al. Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research. Health Expect. 2020;23(3):523-539. doi:10.1111/hex.13040
[4] Kent A. Evidence-informed practices and strategies for patient-oriented research (POR): A ‘menu’ for research teams. 2019. BC SUPPORT Unit: Vancouver.
[5] Saskatchewan SPOR SUPPORT Unit. Onboarding guide for patient-oriented teams. 2019. SCPOR: Saskatoon.
Author Bio
Bryn works in research engagement for a provincial health authority and has a PhD in experimental psychology. When not supporting clinicians, staff, and partners in their health research, she enjoys exploring and photographing the wilderness of New Brunswick.
Social media: @brynphd
