Abstracts

Engaging People with Epilepsy in Collaborative, Patient-Centered Research

Abstract number : 2.059
Submission category : 1. Translational Research: 1C. Human Studies
Year : 2015
Submission ID : 2309114
Source : www.aesnet.org
Presentation date : 12/6/2015 12:00:00 AM
Published date : Nov 13, 2015, 12:43 PM

Authors :
D. Dieguez, D. Hesdorffer, B. Kroner, J. Buelow

Rationale: The Rare Epilepsy Network (REN), led by the Epilepsy Foundation, is a collaboration of 10 rare epilepsy patient advocacy organizations, RTI International, and Columbia University. The REN, funded by the Patient-Centered Outcomes Research Institute (PCORI), is a registry of medical and quality of life self-reported data from rare epilepsy patients or their caregivers. The primary purpose of REN is to increase opportunities for rare epilepsy patients and their caregivers to participate in patient-driven and patient-centered research. Our secondary purpose is to engage these stakeholders in the research process, including identification of research questions and study conceptualization. Here, we describe our strategies to engage rare epilepsy patients and their families in REN’s research efforts.Methods: The REN Steering Committee (SC), comprised of one patient representative or caregvier from each of the 10 rare epilepsy organizations, and the three Co-PIs, constitute REN’s decision-making body. The Executive Committee, comprised of the three Co-PIs and one other member of the SC, is the liaison between PCORI and REN. Our patient engagement efforts are designed to engage patients/caregivers to participate in the research process. Patient engagement strategies include building a Patient Ambassador Program designed to encourage those in the communities to be aware of REN and participate in its activities. Our patient partners are involved in all aspects of REN’s work, including participation in the SC, workgroups, and PCORI Task Forces. We also have an active and ongoing social media campaign that includes Facebook, Twitter, and YouTube. Our main goal is to enroll eligible participants in REN at https://ren.rti.org/Enroll. This gives them the opportunity to enroll in research projects. The Institutional Review Board of RTI International approved all protocols.Results: To date, all 10 rare epilepsy organizations continue to be actively involved in the research process and in decision-making for all of REN’s research efforts. Ongoing patient engagement efforts include recruitment of eligible rare epilepsy patients via emails, internet postings, personal communications, social media outreach, walks, and family or professional conferences. Currently, 619 caregivers of people with eligible rare epilepsies have registered for the REN.Conclusions: Preliminary results show that our efforts are successful in engaging rare epilepsy patients/caregivers in the research process. Our most successful activities are engaging rare epilepsy organizations in identification of research questions and the least successful are encouraging people to be involved in workgroups and Task Forces. This groundbreaking effort represents highly novel, outside-the-box thinking in the service of engaging rare epilepsy patients in research. REN’s work is expected to empower patients/caregivers to be more informed while making their health care decisions. Additionally, REN is facilitating future observational studies, clinical trials, and comparative effectiveness research. Funding: PCORI R-PPRN-1306-04577
Translational Research