Opinion

Changing the Culture of Research to Value Patient Perspectives

For many years, there’s been a movement in medicine to put patients first. Doctors call it “patient-centered care.” To the health care industry, it means improving consumer satisfaction, whether that’s by letting patients compare treatment prices or rate their doctors.

One tenet of this movement is providing treatment that’s evidence-based, meaning it’s based on research about the balance between possible benefits and harms. But there’s a problem: The research that yields this evidence is usually not designed with the patient’s perspective in mind.

Most studies are crafted by medical and research professionals to address important scientific questions. But patients have little input into the outcomes measured. As a result, medical journals are full of data that matter to researchers but often contain little data on outcomes patients care about. For example, research might show how a drug affects lymphocytes — a type of white blood cell in the immune system — but not if it will reduce pain or extend a patient’s life. The result: Many studies don’t deliver the information patients need to make difficult decisions.

Here’s an idea: What if we let patients participate in the design of research?

Such a shift in perspective is long overdue. Scientists may worry that patients won’t understand the research process and its terminology, but when we conduct studies without their input, there’s a good chance we’re not asking the right questions.

Patients are not the only members of the health care community who should offer input. Consider family physicians like me who care for these patients. Studies based solely on researchers’ interests certainly produce great science, but they don’t solve the immediate challenges doctors face in caring for our patients. Community doctors and other clinicians often have as little input into research design as patients do, although they are on the front lines of care. For research to make people’s lives better, it must address the real problems faced by patients and those who care for them.

This is a critical issue for policy makers and those who pay for health care. After all, when we’re trying to provide “high-value” care, whose “values” are more important to take into account than those of patients?

Patients and doctors finally are starting to get answers to their questions, thanks to the work of the Patient-Centered Outcomes Research Institute, a transformative force in getting patients engaged in research. PCORI is an independent, nonprofit research funder authorized by Congress in 2010. In just a few years, PCORI has managed to inspire a change in the culture of research. Its funding requirements compel researchers to demonstrate meaningful patient and other stakeholder engagement throughout the research process. Other funders are following that lead, adopting engagement guidelines PCORI developed, built on the principles of community-based participatory research.

I see first-hand how the PCORI movement is working: Scientists and other research funders are increasingly putting patients first, and all of us will benefit.

This approach changes not just the process but the results. Here’s an example from a PCORI-funded study I conducted with colleagues at Virginia Commonwealth University. We engaged patients from the beginning of a two-year study exploring decisions about cancer screening. Through online portals, focus groups, in-person meetings and a patient advisory board, patients identified their top concerns, added critical perspectives we could not have provided on our own, challenged some project goals, and helped us determine which outcomes to measure.

We also engaged primary care doctors. A clinician group designed strategies to implement the study in busy practices and make sure the study gathered data they needed on the front lines. Did all this matter? Undoubtedly; it changed the course of our study. In fact, we found most of the input we received came not from our expert collaborators but from patients.

Engagement is a two-way street. Health researchers are accustomed to asking how to get patients and the community engaged in their studies. But with so much exciting work happening in communities, the question we should be asking is: How can the research community get involved in what patients and communities are doing to improve health?

Authentic engagement can be challenging and requires sustained effort, but it can vitalize research. I am confident it will become a standard for clinical research as PCORI continues its cutting-edge work. Every American will benefit. Patients, parents, clinicians and policy makers will finally have the data they need to make informed decisions to improve their own health and that of our communities. And that’s a result we all value.

Steven H. Woolf, MD, MPH, a professor of Family Medicine and Population Health, is the director of the Virginia Commonwealth University Center on Society and Health. Woolf’s PCORI-funded research was presented at a Health Affairs briefing in Washington, D.C., on April 7, which he attended with a patient and community research partner. 

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