To mark our fourth anniversary, we invited representatives of our key stakeholder communities to describe the influence that PCORI has had on their work and their perspectives on clinical research. In this post, a caregiver and patient talks about how she got involved in her local health system, than state policy, and recently a national health network that is part of PCORnet. The views expressed are those of the author and not necessarily those of PCORI.

In the aftermath of Hurricane Katrina, my husband and I ended up in a high school in Portland, Oregon, both in poor health, with no health insurance, and $7.49 between us. There we received so much care and attention—and everything we needed to restart our lives. In return, I’ve sought opportunities to contribute to our community, especially to make healthcare better for everyone. I’ve had a variety of experiences, leading from my own medical provider to a State of Oregon advisory committee to PCORnet, PCORI’s national patient-centered clinical research network.

My starting point was a note posted in the lobby of a medical center where my husband and I received care. Oregon Health and Science University (OHSU) Family Medicine at Richmond was looking for patient members for its Board of Directors. Previously, I had been employed in civil service, so I joined that board—and then more and more people got in touch with additional opportunities. Now my activities include the OHSU Quality Improvement Committee and Richmond Patient Advisory Council. I am also a founding member of the Patient Engagement Panel of OCHIN, a large health information network based in Portland. I recently joined the Member Advisory Council at CareOregon (Oregon’s Medicaid Managed Care Organization) and the Governor-appointed State Medicaid Advisory Committee.

I am also a patient advisor to the Accelerating Data Value across a National Community Health Center Network (ADVANCE) research network, which is part of PCORnet. OCHIN is the lead organization for ADVANCE and brought its Patient Engagement Panel into the project.

Keeping Engaged

More than 10 years ago, I gave up my second-grade teaching position to attend to my husband who has several chronic medical conditions and was unable to manage his medicines and care for himself. More recently, I’ve been diagnosed with ankylosing spondylitis, so we now use an outside caregiver to help us.

I always enjoy giving the patient or caregiver point of view. The researchers will talk and talk, and I’ll say, “Wait a minute. You are all overthinking this. Just do 1, 2, 3. That’s why you have included me—a real person.” It’s all exciting and interesting. I like to keep engaged.

I first learned about patient-centered care and heard about PCORI at a conference I attended representing CareOregon. I am naturally curious, and was once a children’s librarian, so I always have to look things up. When I found out more about PCORI, I decided I wanted to participate in its activities. Coming from the South, where healthcare is often far behind the times, I feel it’s vital to keep pushing forward to improve healthcare everywhere.

Learning about Research

Although I’ve been involved with public and community health, I’m just starting to learn about clinical research. I find it fascinating. It’s essential because it’s the way to show direct cause and effect. As a caregiver and a patient, I’ve often looked for accessible information based on scientific evidence. Often what was available was over my head or all over the place, sometimes too general, sometimes not general enough.

Now I’m helping researchers to collect information valuable to patients and caregivers. In my role with ADVANCE, I’ve helped review the draft of the questionnaire that the project will use, as well as tools for recruitment and patient-reported outcomes. In addition, I may serve as a patient partner in a project on low back pain, which I experience as a result of my ankylosing spondylitis.

Through my involvement with patient-centered care and research, I’ve gained so much knowledge with these many opportunities. A couple months ago, I was a co-presenter at a conference in Vancouver, when just two years previously, I was grateful to just attend the conference.

In the future, I’d like to see better alignment of the healthcare system with patients and caregivers. That will require more sharing, working together, and understanding each other. The researchers, who work so hard, need the patient and caregiver perspective to encourage them to take an efficient, straightforward approach.

I think the work PCORI is doing is vital. I’m delighted to be part of it. I just hope all parts of the country will use the evidence that results to improve the quality of patient care.

Dickerson is a caregiver, a member of the Board of Directors and several committees of Oregon Health and Science University Family Medicine at Richmond and of CareOregon Medicaid Managed Care Program’s Member Advisory Committee, OCHIN’s Patient Engagement Panel, and the State of Oregon Medicaid Advisory Committee. She also plays trumpet in several marching bands.