Patients as Partners in Research

I’m a huge believer that our patient stories are a type of data, and that patient engagement includes using these stories as data within medical research. Clinical trials are the most familiar example of patients as partners in research. Simply put, research cannot exist without patients! I am also a strong believer that truly patient-centred research involves patients from the moment a research project begins.

Often a default mental image of patients in research is as participants in clinical trials. This is an extremely important role that patients are in, assisting with development of more treatment options. However, I believe that for the best solutions to be created, patients should be seen as co-designers in research from the earliest stages… and not as an afterthought, or only involved in a piece further down the road of research, like a clinical trial study.

Fortunately, shifts in research are beginning to take place, that involve patients earlier. I hope we soon see a shift in the research landscape, where patients are seen as co-designers in the research process—not as an afterthought. After all, whether developing a new drug or studying a healthcare system, the solutions being looked into are about us—patients. Nobody knows what works for us better than we do, but also, solutions that work for one of us may not be a good fit for another.

Research is broad: it does not only look like a lab, or an investigational drug, or mice running around in mazes. Here are some commonly asked questions about research

What is a clinical trial?

In 2014, I had the opportunity to attend the Partnering for Health workshop at Stanford MedicineX. In this workshop, patients had the opportunity to learn about the clinical trials process—as well as educate the facilitators about how to present more effectively for patients to understand (that was a fabulous but unintended lesson learned!).

A clinical trial is a study that determines if an intervention—a medication, behaviour change (like exercise or smoking/drug/alcohol cessation), procedure (like surgery), or a medial device is safe and is effective in producing the desired outcome. Patients often become involved in research in one of the clinical trials phases, to be the first to receive a new treatment (or a placebo—which means they do not receive the study intervention)—Asthma.Net has a post on Clinical Trials phases that you can check out.

What is a research study?

A research study is defined by the University of Pittsburgh as "a scientific way to improve or develop new methods of health care”.¹ A clinical trial is a type of research study, but it is not the only type of research study that requires patient involvement. Research studies for health include looking not only into treating a disease, but also behaviours that may impact a person and/or their disease positively or negatively, or to better understand a healthcare system to make it more efficient, improve methods of providing care, and more. ¹

How are patients a part of the research team?

Patients are a part of the research team by providing important data—whether that is quantitative data (things that can be counted or measured in numbers (including pulmonary function tests, blood tests, symptom logs, asthma control rankings, etc.)—or qualitative data (using their own stories and experiences as data, where researchers search for themes in participant experiences). Patients are to be honest about their experiences, but in all cases are free to withdraw from the research at any time without repercussion. In clinical trials, patients are monitored closely and log important data (in asthma studies, often symptoms and peak flow/FEV1 measurements), and report potential side effects to their research team or study coordinator.

While it is only beginning to ‘catch on’, patients are also becoming increasingly involved in the study design process, offering feedback to researchers on what is important to them, and as patient co-investigators on the research team.

More than "Lab Rats": Patient Investigators in Research

For the last year, I’ve been involved in a research study with the University of Alberta—not as a participant, but as a patient co-investigator. The principal investigator (PI for short - primary or lead researcher on the study team) sent me an e-mail one day asking if I had any research/research writing experience and simply said “If not, consider it—with my help.”

Academic writing is a strength of mine, but writing a research protocol was brand new to me—while the PI knew me well enough and about my patient and academic background, we’d only been in contact by phone and e-mail at that point. The reality is: she—and many other researchers—understands the importance of involving patients early. Even though I began with no idea of what I was doing, my questions of “why are we using this instead of this,” have always been met with consideration: my official title in the study protocol is “Patient Group Investigator”. Since that day, I have reviewed and edited the protocol document in each stage of its existence, as well as reached out to other patients and patient groups for feedback on the protocol design.

I’m enjoying the learning curve involved in research. Patient co-investigators each bring a unique set of skills to a research team—“How much do you know about social media?” and “You’re pretty good with Internet/video?” are two things I never considered as research skills, that I’ve been asked about at different points! It’s about getting the right mix of people on a research team (although some physicians/researchers are more comfortable with including patients than others!)

It’s up to us, as patients, to advocate for this change: to involve more patients in research, earlier. Groups like PCORI—the Patient Centred Research Outcomes Initiative—a non-profit, non-governmental organization in Washington, DC, are already out there driving this need for change. PCORI is not the only group of its kind, but it is one that provides the most consistent opportunities for patient engagement, stating they are the “[…] largest single research funder that has [clinical effectiveness research] as its main focus, and we incorporate patients and other stakeholders throughout the process more consistently and intensively than others have before.” This is important, because the more voices that are present, earlier and throughout the process, I believe, the better the solutions, changes or strategies that emerge will be for us.