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Article Title

Partnering With Patient Advisors in the PORTAL Clinical Data Research Network

Publication Date

4-30-2015

Keywords

patient engagement, patient-centered outcomes research

Abstract

Background/Aims: PORTAL, composed of Kaiser Permanente, Group Health Cooperative, Health Partners and Denver Health, is a PCORnet network focusing start-up efforts on identifying what matters most for patients with obesity, colorectal cancer and congenital heart disease (three cohorts) and building capacity to conduct patient-centered research to address those priorities. This presentation will describe the Patient Engagement Council (PEC) and an associated Online Advisor group guiding PORTAL’s development.

Methods: The PEC is composed of 10 patients representing each of the cohorts as well as three representatives from cohort-specific advocacy organizations. PEC members attend an in-person meeting for orientation/team-building and subsequently offer guidance through 10 webinars, emails and conference calls. PORTAL seeks PEC members’ input about how to engage patients in research, identify research questions and methods that matter to patients, and facilitate communication between PORTAL and broader audiences. Eighteen online advisors are being recruited to help PORTAL establish three cohort-specific online Smart Patients communities –– where patients and caregivers learn from each other about the latest science, treatments and patient concerns. Online advisors work with Smart Patients to identify key topics and develop early content for the online communities’ discussion boards.

Results: Eligible members were identified within each health system through clinical and operational liaisons and were then interviewed by PORTAL staff. Selected candidates were invited to join as PEC members or online advisors. All of the PEC members have been recruited, completed the orientation, and participated in the first webinar focused on cohort-specific survey questions/modes of survey administration. The successes and challenges of recruitment, hosting in-person and online meetings, and PEC contributions to PORTAL’s start-up phase will be presented. Prior to the conference, all 18 online advisors will have been recruited and completed their work setting up online communities. The benefits and challenges of engaging online advisors will be presented and the online communities will be described.

Discussion: This presentation of the process and initial outcomes of engaging patients in the development of a large multisite network will have broad significance as a model for engaging patients in research network development.

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