Patients and caregivers offer important opinions and suggestions regarding health care as well as experience and information from the patient perspective.
ADVANCE aims to empower patients and caregivers to be involved in the research design and implementation process.
The Patient Engagement Panel (PEP) is a group of people who are interested in research and the way it involves and impacts patients and caregivers. Patients and caregivers have an important perspective as recipients of care and community members. The PEP gives patients and caregivers a way to actively advise and guide decision makers, providers, and researchers in work to improve healthcare experiences and treatment options. PEP members share their insights and suggestions on issues such as:
- The development of research topics and questions
- How changes to health care delivery impact patients
- How to share research findings with the general public
- How to encourage patients to take part in research
- How to improve health technologies to support care delivery and engage patients in their own care
For more information, please email the OCHIN PEP Lead at firstname.lastname@example.org.
JOIN THE PEP
Bring your voice to conversations around health care delivery and research!
Join OCHIN’s Patient Engagement Panel, or PEP, to share your unique patient perspective and help shape primary care research and improvement programs.
Members meet for one hour, every other month (February, April, June, August & October). The meetings are completely remote through the Zoom video teleconferencing software.
Project and proposal consultations between meetings may be by video, phone, or email. Consultation invitations are sent to PEP members on an as needed basis.
Many consultations include payment or a gift card to thank you for your time taking part.
For more information on how to get involved with the PEP, please email the OCHIN PEP Lead at email@example.com.
MEET THE PEP
PEP Member since 2014
Being a patient advocate, you can bring firsthand knowledge to the study to match their intellectual interest.
ABOUT JEAN BAKER
Jean Baker is a long time resident of Portland who is interested in finding methods of alleviating the drawbacks to health caused by Social Determinants of Health. As a member of the OCHIN, Inc. Patient Engagement Panel (PEP) and a board member at OHSU Richmond Clinic, Jean is an avid advocate for patients. Her knowledge is based on years of volunteer work with organizations that raise funds, feed the homeless, and organize food and clothing drives. She became a member of PEP because she wanted to find a way to help patients connect to applicable community resources.
When asked “Why is the PEP important to you?” –
It’s surprising that PEP is needed because researchers are also patients. Perhaps they are so focused on the data that they don’t think about the implications of the results beyond the final report.
PEP Member since 2013
I’ve enjoyed meeting research members to learn from them and broaden my points of understanding
ABOUT KAY DICKERSON
Kay Dickerson is a retired civil service employee who serves as a caregiver and advocate for her husband, who has multiple chronic medical conditions. In her spare time she volunteers with multiple patient and community boards. Since 2007 she has served on the Board of Directors at Oregon Health & Science University Family Medicine at Richmond Health Center FQHC. She is also on the OHSU Richmond Patient Advisory Council and a member of their Quality Improvement Committee. She joined the Community Health Engagement Advocates at CareOregon (Oregon’s Medicaid Managed Care Organization) which lead to lead to many social opportunities, including being in the Starlight Parade, Portland’s annual Rose Festival event. She has attended multiple healthcare advocacy trainings since 2011 and participated in advocacy initiatives at the Oregon state capitol. With enthusiasm to help others and give back to her community, Kay looks forward to continuing her efforts as a PEP member and patient investigator by sharing her personal experiences and insight with healthcare while partnering with researchers.
PEP Member since 2018
Being a Patient Advocate, I feel like I have the ability to speak for people who cannot speak for themselves. I think patient advocacy gives another perspective and the strongest stories come from those who have experienced it (patients).
ABOUT GEORGEANN WENCE
GeorgeAnn lives in Eureka, California with her dog Eva who is a Blue Heeler. She graduated from Humboldt State University with a Master’s degree in Psychology and is currently enrolled in the local community college (College of the Redwoods) studying Digital Media looking toward making commercials, radio ads, and billboards. She has one son and five grandchildren whom she spends lots of time with on the weekends.
GeorgeAnn has lived in Humboldt County for 24 years where she has been a teacher and involved community member. She volunteers at her local clinic (Open Door Community Health Centers), Partnership Health Plan of California (Medi-Cal or Medicaid), and Seeds of Change (a local group that fights stigma and discrimination by telling stories of lived experience).
When asked “What has been the biggest lesson learned so far as a patient advocate?” –
Speaking up for myself and for others. It is important to me to have a voice in what happens.
PEP Member since 2014
The biggest lesson I have learned as a patient advocate is that I am valued. My experiences, my opinions, are all valued, as both a learning tool for the researchers, and as a patient in previous research to let others who have never participated in research, to know a little of what they can expect to happen. While all research is different, all of it is also much the same. We all want a good outcome for the benefit of the future.
ABOUT PATTY POSTON
Patty Poston became involved in medical research when she worked on an Alzheimer’s study as Intake Clerk. A decade later, she found herself involved in several studies as a patient, doing everything from simple surveys and medications, to small invasive procedures (blood draws, etc.), and various hearing tests at the National Hearing Research Center at the VA Hospital as a ‘normal—never been in combat’ for comparison to the Veterans who had been.
In March 2014, Patty was asked to get involved in OCHIN’s Patient Engagement Panel (PEP). While she initially wasn’t sure if it was something she wanted to do, after attending her first meeting where attendees were asked to share their opinions on aspects of research from a patient’s point of view and she was amazed that the doctors and research assistants in attendance were actually listening, taking notes, and interested in what else we had to share. To her it made sense that they needed to know these things as most researchers do not have a lot of experience with patient contact, unlike Primary Care Providers who see patients daily.
Since then, she’s been involved with OCHIN’s PEP, the Clinical and Patient Engagement Workshop (CAPE), and as a Patient Investigator on the Health Disparities Collaborative Research Group (HDCRG). In 2015, she served on a panel at OCHIN’s Annual Learning Forum and served on CareOregon’s Senior and Disabled Advisory Council (COSDAC) from May 2013 – April 2017.
When asked “What is the best thing about working with OCHIN Research?” –
I love working OCHIN Research because I have the opportunity to connect with people, both Patient Advocates like me, and Researchers, from all across the country, and foreign countries, who have common interests–working on the same projects that I care about.
Laura E. Williams
ABOUT LAURA E. WILLIAMS
Laura E. Williams, MS is a Consultant of Health Literacy and Education at Creative Health Literacy, which provides evidence with compelling data visualization. Laura believes that “understanding and defining individual roles in health care systems is an untapped area of both quality improvement and health literacy.”
ABOUT MICKIE AERNE-BOWE
Mickie Aerne-Bowe has been a patient and caregiver for over 30 years. She lives with her husband Jeff in Hillsboro, OR. They have four kids, two grandkids, and two English Bulldogs. Mickie has been medically retired since September of 2014. Before her medical retirement, she owned a company called Ruckus Rules, which started in 2007. They specialized in pet product representation, product reviews, and fund-raising for animal rescue. Prior to starting Ruckus Rules, she owned a mortgage company. She volunteers with animal rescue and serves as s Patient Partner on the Kaiser Permanente Westside Patient and Family Advisory Council and the Kaiser Permanente National PFCC Workgroup. She has spoken to audiences internationally, nationally, regionally, and locally about the importance of the patient voice by using her story as an example of turning dark moments into beautiful rays of sunshine.
ADDITIONAL PEP MEMBERS