Engaging Patients and Communities in Improving Health: An interview with Susan Lowe and Kristen Dillon

Reprinted from the Spring 2015 ORPRN Newsletter

PBRNs, including ORPRN, are increasingly engaging patients and stakeholders in all phases of research—from setting research priorities to designing studies to disseminating results. Engagement offers the opportunity to make research more patient-centered, relevant to community needs and priorities, and likely to be adopted into practice. ORPRN interviewed Susan Lowe, consumer/patient advocate, and Kristen Dillon, family physician and ORPRN steering committee member, about patient engagement efforts in in the Columbia Gorge region and what they’re learning from their experiences.

Margaret Spurlock: Why do you think patient engagement is important?

Susan Lowe: Because you have to have the whole picture, and without patient engagement you’re missing a piece. In order to have the full picture you’ve got to have all the players at the table.

Kristen Dillon: As a primary care clinician in practice I’m a prime consumer of health and health care research, and I’m not particularly satisfied with the quality of what I have to work with right now. I feel like the lack of engagement with consumers like me leads to a lot of research coming to conclusions that either aren’t relevant to most of the things that my patients need or that aren’t applicable because the research itself was so specific and sterilized.

MS: What role is patient engagement playing in some of the transformation and research efforts you’re both involved in in the Gorge region?

SL: I’m part of the Community Advisory Committee, and that group got to allocate part of the transformation dollars, which was huge. I did a presentation at a statewide summit and other areas did not do that. In the Gorge, patient engagement is very much looked at and listened to.

KD: For me the experience with the Coordinated Care Organizations has built my motivation to do this work in clinical services and in research as well. It’s helped me see the hubris in those of us who provide the services thinking we know what the people we’re trying to serve need instead of building relationships to be able to ask them. Just seeing how well the process of integrating the consumer and community voice into the CCO has made me motivated to bring more of a spectrum of perspectives to health research.

M: Have you seen changes to projects that may not have happened without patient engagement?

SL: I presented a proposal for Meals on Wheels for post-surgical and patients who are under the age of 60, and out of that has come a real need for nutritional value for people with mental health issues who are under the age of 60 who have multiple physical and mental problems. Because of the patient engagement in that process, the project has found that there’s a real gap in help for a particular population.

KD: We’re just getting ready to start work through the Knight Cancer Institute project to improve our structures for colon cancer testing in our community. I was meeting with a group of Latino health advocates, and it was really interesting to learn—as opposed to what we thought—they weren’t affirming that there are any sorts of bad rumors about colon cancer screening in the community. They just felt like they were completely unaware that it was the recommended test. They even reflected on the fact that they knew about mammograms and they know about Pap smears, but this was one that most of them had never heard about … They were saying “we think women are more comfortable talking about this with women than with men; so if you’re going to work with groups of people, maybe you should split up the men and the women.” That was an example of something that we wouldn’t necessarily have thought of ourselves, but based on the group dynamic and what people were observing could be really helpful in coming up with a better project moving forward.

MS: What are some of the things you’ve been learning through this work?

SL: I’ve learned a lot about primary care and how undervalued it is. I think from that perspective I’ve learned that the more educated patients and the community are, the better they can advocate for change.

KD: I think one of the things that needs to happen before you can have these types of dialogues is different groups of people need to be in relationship with each other, and it’s been interesting to experience how valuable it is for me to be here in the community not primarily in an academic center somewhere else. Even then, I’ve felt like I’ve needed adapt how I present things and try to go to the groups and the people we’re trying to reach instead of expecting them to come to us. The other thing that’s been surprising is that I’ve always felt that health research is a bit esoteric, and I’ve been really surprised by how quickly people understand why it matters to them and how enthusiastic the community has been about getting involved.

This interview has been condensed and edited.