Lessons Learned from Developing a Patient Engagement Panel: An OCHIN Report

Lessons Learned

In the beginning, we limited the PEP membership to English-speakers who were competent using technology (E-mail, computer, remote meeting software) and were available during weekday meeting times. We learned that patients who self-select to participate in this kind of endeavor are not “average” patients and come with drive and direction, which provided necessary momentum. The founding PEP members are now leading the PEP and help to recruit members and foster a collaborative, supportive environment. Over the past 2 years, the PEP has been involved with 12 projects as advisors and patient experts. The most active members serve as patient co-investigators on several projects,²⁶ present at national conferences, and help develop research proposals and manuscripts.²⁷

We created a brief, lay-language description of the expected role, time commitment, and potential benefits (Appendix 1) for potential PEP members. In the second year of PEP recruitment we focused on diversifying the PEP with guidance from our founding members (eg, improving the recruitment materials, identifying recruitment outlets). The 18 current PEP members now represent 3 states; meetings are held on a regular weekday evening to increase participation opportunities (acknowledging shifting schedules, this meeting time is frequently reviewed to ensure it still works for the majority of the group), and we offer food and travel compensation to members who join in person. We have loaned a laptop computer to 3 members and a purchased a cell phone–compatible headset for 2 others to help ease the difficulties of participating in conference calls. While the PEP members have become more diverse in age and geographic dispersion, the group is still aspiring to be even more representative of the OCHIN patient population as it matures.

Lessons Learned

We started out using research grants and were also able to leverage infrastructure development grants from the Health Resources and Services Administration, the National Institutes of Health, and PCORI to fund the PEP. OCHIN as an organization has prioritized this work and hired a full-time patient engagement coordinator (NW), who oversees a modest budget. This role has primarily been funded by an infrastructure grant and provides oversight for all patient engagement activities, from research-specific (defining the scope of the patient role in a research project, identifying patients interested in the content area who are willing to serve in an official capacity) to organizational policy development (coordinating workgroups to support patient engagement strategies in CHCs, negotiating reimbursement with funders). Further opportunities for funding this work may include private nonprofits with more diverse funding initiatives and budgeting this work in future traditional research proposals that explicitly incorporate patient engagement. We have also discussed holding PEP fundraisers or creating an endowment for the PEP. As a learning organization, we realize that evaluation is critical to the continued success of an initiative such as the PEP; starting in 2015, we will be evaluating both process and outcome measures and are confident that demonstrating success will help with securing funding.

Lessons Learned

After making the decision to start a PEP, we felt it was very important to engage patients in the establishment of the group. While the PBRN and OCHIN leadership envisioned the role of the PEP, this progressed further once our founding patient members were recruited. The members participated in discussions outlining the role the PEP would play in research question development, study design, and dissemination. We currently use the following role description: “The PEP gives patients a way to actively advise and guide decision makers, providers, and researchers in work to improve patients' health care experiences and treatment options. Patient PEP members are sought out to serve in an advisory capacity on grant proposal development, patient recruitment models, tool development, project communication, changes to clinic workflows, and dissemination for patient populations.”

PEP members are encouraged to pursue continuing education opportunities, including research-specific training by local organizations, conferences relevant to their research interests, and institutional review board trainings (enabling patients to be added to institutional review board protocols as co-investigators and study staff). In addition, members are also encouraged to participate in dissemination activities by having the opportunity to present findings at research conferences, annual meetings, and webinars. A “Research 101” curriculum is being developed at OCHIN to serve as an orientation and learning opportunity for current and future PEP members.

Lessons Learned

Working in partnership with PEP members, we moved to a different compensation model, which is based on the idea that compensation must be equitable and transparent but does not need to be the same for everyone. PEP members reported that they were happy to volunteer their time, interested in opportunities to attend and present at research conferences, and said they would welcome receiving a token of appreciation (eg, gift card, travel reimbursement, donation on their behalf to a charity). We now work with PEP members to determine a customized compensation model.