About Us

To mark our fifth anniversary, we asked patients, caregivers, clinicians, and researchers to describe their experiences with engagement of healthcare stakeholders in research and share their thoughts about building a patient-centered clinical effectiveness research community. The views expressed are those of the author and not necessarily those of PCORI.

How did you get involved in patient-centered research?

I wear two hats, both of which led me to patient-centered research. As a health services researcher, I am interested in helping patients prevent illness, for example, by adopting healthier lifestyles and taking part in cancer screening. The research literature says that such choices require patients to think through benefits and harms, and that doctors should encourage good choices by engaging patients in shared decision making. Twenty years ago, my colleagues and I established a practice-based research network that conducts studies in primary care settings. Over time, we realized that we needed to look through the patients’ lens to understand their questions and learn what they see as barriers to receiving recommended care.

In addition to performing research, I run the Virginia Commonwealth University Center on Society and Health, which looks outside the clinic to understand the role of social determinants of health. This public health work espouses what's called community-based participant research—actively engaging community members in trying to understand factors affecting their health and in designing practical solutions to health problems. PCORI‘s patient-centered approach echoes this much older public health orientation. Both are oriented around respect for patients and other community members, recognizing that the affected parties understand the challenges they face better than “experts” who have not lived under those circumstances.

Can you give an example of how you've applied the principle of stakeholder engagement in your clinical research?

In our recent PCORI-supported study on patient preferences in cancer screening, we found stakeholder engagement much more useful than we had originally expected. We'd said in our proposal that we would engage patients and other stakeholders by conducting focus groups for input on a questionnaire we were designing. But as the focus groups were being completed, we felt we had just scratched the surface of what we could learn from the participants. We could have stopped at that point if we just wanted only to check the “engaging patients” box. But we were quite aware that we hadn't fully benefited from their input.

So we asked the patients to continue meeting over the coming months in an online discussion group to help us develop ideas and review documents related to the study. That gave rise to a patient advisory board that met every month. We also had a clinician stakeholder group, and the two groups decided to meet together. So we had larger monthly meetings, with patients and clinicians working together, throughout the course of the project.

What impact did this have on the research?

Actually, we're writing up a paper quantifying it. In the first year of developing the questionnaire, we received more than 700 comments from the stakeholder groups as it went through more than a dozen iterations. We asked all the groups to provide input, and patients were responsible for more comments than our teams of clinicians, cognitive scientists, decision psychology experts, or heads of healthcare systems. Patients had the most to say—and had the most impact on the final outcome.

What's the biggest thing you've learned from patients and other stakeholders?

We’ve learned that the typical orientation of the academic research community is backwards. We're accustomed to asking how we can get patients and the community engaged in our research. The question should be: how can the research community get involved in what patients and communities are doing to improve their health?

That perspective brings some humility into the process and allows research to be more productive. Taking the patient- and community-centered orientation, rather than shaping research around questions that happen to interest investigators, means we will be gathering data that people need to move forward, and it makes it more likely the products of our research will be put to use.

Once you get off your pedestal, you realize you have a lot to learn from patients and their community. Engaging patients as equal partners creates a respectful, trusting relationship that improves the quality of research.

What do you hope patients have learned from working with you?

I hope they've learned that there's a kind of research that's capable of producing information useful to them, rather than being some arcane activity irrelevant to the world they live in. Many people think that research involves test tubes and labs, and they find it hard to imagine what it might have to do with regular health care or what goes on in their neighborhood.

And there's a tension—a kind of town-gown phenomenon—between patient populations, especially disadvantaged and minority patients, and academic medical centers. In communities that live in the shadow of those centers, there's a feeling that the people in those big, gleaming buildings don't understand the real world of nearby residents. Often, community members feel exploited when they are engaged in trials but have nothing to show for it when the grant ends and the researchers leave.

We began our project in a community with a long history of such exploitation, where we faced a lot of skepticism among residents. By being authentic and treating community members as true partners, we've turned that attitude around 180 degrees.

What's Happening at PCORI?

The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.

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