September 22, 2023
As the leader of the ADVANCE Clinical Research Network, OCHIN manages the country’s most comprehensive community health database of more than 9.6 million patient records, partnering with researchers nationwide to advance national health equity research. OCHIN works to center our research around the patients our members serve by engaging with real patients and caregivers themselves. To increase representation of systemically marginalized communities in clinical research, our work is designed with input from our growing Patient Engagement Panel (PEP).
The OCHIN PEP is a dedicated group of individuals who meet virtually every other month to advise on research and the way it involves and impacts patients and caregivers. Coming from a diverse range of backgrounds and lived experiences, these PEP members share their perspectives as patients, family members, caregivers, community members, and advocates.
This year, the OCHIN PEP is recruiting five new members to join in their mission to help guide research that improves health and health care for underserved communities. We asked several current PEP members to answer a few questions about their experience:
Why is patient representation important in advancing health equity research?
“Having a diverse PEP is so important because we all have different lived experiences. So we all bring something different to the table.”
—Susan Lowe
“Being involved with the PEP has been a really interesting way to give a patient voice to researchers that may not otherwise have that perspective.”
—Shirley Stowe
“It is the patients who ‘experience’ healthcare delivery and results, and by reporting actual experiences and outcomes, patients give insights that are often missed by the team delivering the care.”
—Trish Divine Wilder
How does the Patient Engagement Panel support OCHIN’s vision to achieve well-being and good health for everyone?
“What we learn is interesting, and so diverse. Our current PEP has members from across the U.S., in both locations and jobs, in both large and small medical centers, some of us are retired, and our diversity is in harmony. We are all looking for the same thing: equality. We are all people, with many of us living with the same medical needs. We all have questions and need answers. PEP helps us ask the right questions and get the answers for everyone.”
—Patty Poston
“With a diverse group of medical professionals and those who have received care, the PEP uncovers views that are often a surprise to those who have vastly different experiences. We surprise each other, too!”
—Trish Divine Wilder
“By bringing the patient voice to the center of research and health care.”
—Mickie Aerne-Bowe
What are some things you have done as part of your involvement in the Patient Engagement Panel?
“I enjoyed the work on AI (artificial intelligence), and I really liked the power of the work around equality.”
—Mickie Aerne-Bowe
“I think reviewing research studies is one of my favorite things we do for the PEP. We all have different experiences and contribute those experiences in studies.”
—Susan Lowe
What is your favorite part about being a member of the Patient Engagement Panel?
“The experience has also led to other really interesting ways to be involved in research; plus, a bonus is meeting many very interesting people from all areas of the country!”
—Shirley Stowe
“That my voice matters and is important in decisions about medical care for the masses.”
—Mickie Aerne-Bowe
“I love giving input to studies and especially when asked to work on studies specific to each of our areas of interest. It works well.”
—Susan Lowe
“The best part was meeting other people like me, meeting others in the PEP and learning to shape what I had already learned about research … Possible recruited patients want to know answers the researchers might not be able to answer. But people like me, and all the others in PEP can because of our experiences, our training, our firsthand experience getting to know the researchers.”
—Patty Poston
Why is patient representation important in advancing health equity research?
“If you are comfortable using Zoom, and you are curious, thoughtful, have a distinctive perspective on health care based on your personal experience, and you would like to advocate for fairness in health care for all, you would be a welcome addition to the OCHIN Patient Engagement Panel.”
—Trish Divine Wilder
“[It’s] a great way to make sure that the future of medicine is focused on the patient working with medicine instead of being worked on by medicine.”
—Mickie Aerne-Bowe
“If you’re interested in participating in research studies and giving input based on your lived experiences, the PEP is a great place to start.”
—Susan Lowe
“I think you are right to consider the commitment, because what we do is so important to us all. The time commitment is small compared to what we learn at each meeting. I joined about nine years ago at the request of neighbors already on the PEP. I already had several years in medical research as a client. This was a move to the other side of the table, learning how to shape the research already looking at their next question.”
—Patty Poston
ADVANCE is funded through the Patient Centered Outcomes Research Institute (PCORI). For more information about joining OCHIN’s PEP, submit an interest form.
