When patients become researchers
Two Group Health members talk about what it was like to be co-investigators on a study from the national Patient-Centered Outcomes Research Institute.
Truly patient-oriented health studies are the goal of the Patient-Centered Outcomes Research Institute (PCORI). Established under the Affordable Care Act, PCORI has been supporting research since 2010 on topics that are a high public priority such as low back-pain treatments, breast cancer screening, and more. PCORI, which has awarded more than $850 million for studies so far, is revolutionary because all projects include patients — not only as study participants, but as research team members.
One of the first PCORI-funded projects, now called LINCC (Learning to Integrate Neighborhoods and Clinical Care) is led by Group Health Research Institute Assistant Investigator Clarissa Hsu, PhD. LINCC helps connect patients to community resources that provide health-related assistance, for example with physical activity, healthy eating, or senior activities.
GHRI Scientific Editor Chris Tachibana had a conversation with Dr. Hsu and LINCC patient co-investigators Michele Robbins and Janice Tufte. Ms. Robbins and Ms. Tufte are health research pioneers, as two of the first patient co-investigators on a PCORI project. Here are excerpts of their conversation. Tell me about yourselves and how you got involved in LINCC.
MR: I’m retired from the utility industry as a community service specialist and a group facilitator. After retirement, I joined a small consulting firm. I also have a sporadic part-time job at a local theatre and am on the Redmond Library Board. I’ve been a caregiver for my husband and mother-in-law. Group Health sometimes asks me to do volunteer projects so I helped with this PCORI application. When we got the funding, I was invited to a meeting about the project. I’d never been in a room with so many MDs and PhDs and realized I was being asked to be part of the research team. I was honored and became fully engaged.
JT: I have a small business, Hassanah Consulting, where I’ve started six projects focusing on poverty awareness, offering simple community-building solutions. I provide detailed community-resource guides and am involved with health care advocacy and policy. I’ve volunteered with Group Health Governance Services, so Director Anne Marie LaPorte told me, “There’s an opportunity you might be interested in.” I read the grant and looked up PCORI and was very excited about patient participation and wanted to be a part of the project if possible.
How do you explain your LINCC work to your friends and family?
JT: I describe the LINCC acronym because that says what we’re doing. My patient friends and people in medicine say, “That’s great, we need that everywhere.” But hardly anybody has heard of PCORI, so I share with them what I know about it.
MR: I start with PCORI and say it’s a new source of research money and the first two words are “patient-centered” and that’s where I fit in. I talk about GHRI and their innovative approach to research, like how Group Health is innovative in health care. I talk about being an active part of the science team, that our role is to come in as novices and give the patient and caregiver point of view. When the researchers get wrapped up in the study details, Janice and I ask, “How does this help meet our project goals?”
CH: Yes, you guys help us keep an eye on the big picture. It’s good to have people like that on the team. You also make sure the language in our documents for clinics is consistent and clear.
What has been surprising or enjoyable about your LINCC work?
MR: Learning an entirely new discipline. Getting to know Janice and working with her as a fellow patient co-investigator. Our backgrounds and experiences are different, yet we are very compatible and learn from each other. We’re treated as fully participating members of the research team.
JT: Being part of a team of health science researchers, delivery system leaders, patients, statisticians, survey experts … I’ve enjoyed building a bridge between clinical care and community resources.
In 2013, Clarissa and I got to go to Washington, D.C., to present about LINCC to the PCORI Board of Governors. I met national leaders like Francis Collins, the director of the National Institutes of Health. They were very interested in hearing about my experience being a patient voice on a research team and how important the patient perspective is.
What has been challenging?
MR: We had to pass several tests about protection of human subjects in research. It’s good to learn about, but I wasn’t anticipating that. Nothing has caught me off guard since then.
JT: Learning the science language and acronyms used in the team meetings took some time. A list of common terms helped. So did separate meetings with a designated team member just before the main science team meeting to answer our questions.
How has the LINCC experience changed you?
MR: I never used to read newspaper stories about the conclusions of a study. Now I read them and appreciate what went into the end results — all the checking of the statistics and writing and rewriting. If people ask me if I saw a story about a study, I say, “Yes, and by the way, do you realize how much work goes into that research?” I feel more confident when a new product or pill comes out, because I appreciate the study behind it.
JT: I have the opposite feeling. I went to an evidence-based guidelines conference and found out that positive findings but not negative findings tend to get published, even though finding out what doesn’t work can be a more important result.
But the experience has been wonderful. I read research articles now and various people contact me because I’m also a PCORI Ambassador — a volunteer who helps build the patient-centered research community. I’ve encouraged community organizations who work with people with social disparities and lower income to apply for PCORI funds.
What would you tell someone thinking of getting involved in a study — not at your level, but as a study participant?
JT: I’d encourage them. But for clinical trials of a medicine or a device, remember that it might have adverse effects. Read up and think before getting involved.
CH: It’s different in health services research like LINCC, because instead of drugs and devices, we’re testing health care or services provided.
MR: I’d say, do it. There’s so much you can learn by being involved in research.
An earlier version of this article appeared on Group Health Research Institute’s Healthy Findings blog.