Materials designed to support researchers who recruit, train, and work with patient partners
The Kaiser Permanente Center for Health Research (CHR) has recently released the Patient Engagement Toolkit, a freely available public resource. This web-based toolkit provides practical resources to support researchers who want to recruit, train, and work with patient partners as part of their research.
The toolkit materials were created as part of PORTAL (Patient Outcomes Research to Advance Learning), a five-year project funded by PCORI and led by Co-Principal Investigators Elizabeth McGlynn, PhD, the Senior National Executive Leader for Research in Kaiser Permanente, and Tracy Lieu, MD, MPH, Director of the Division of Research, Kaiser Permanente Northern California. The project brought together three leading health care delivery systems— Kaiser Permanente, HealthPartners, and Denver Health—and their affiliated research centers, along with patients, clinicians, and operational leaders, to build infrastructure to conduct patient-centered research.
PORTAL’s Patient Engagement Council attended the 2018 HCSRN conference. Front row (L-R): Chuck Anderson, Henry Werch, Reese Garcia, Carolyn Taylor. Back row (L-R): Chalinya Ingphakorn, Carmit McMullen, Janice Tufte, Mickie Bowe, Nicole Sanchez, Les Taylor, Suzanne Gillespie
PORTAL was advised by a Patient Engagement Council (PEC) composed of ten patient partners and advocacy group representatives. A team based at CHR trained this group and facilitated their work with researchers. PEC members offered their perspectives on proposal development and dissemination via webinars, conference calls, and in-person meetings. Six PEC members are now grant-funded as patient partners on studies. PORTAL Co-Investigator Carmit McMullen, PhD, a Senior Investigator at CHR, and PEC Co-Lead Carolyn Taylor, PhD, a patient advocate from the KP Mid-Atlantic region, led these efforts.
PORTAL ended in 2018, but the materials the project created will live on as a public resource to facilitate future patient engagement in research.
For more information about the Patient Engagement Toolkit materials or the project, please contact Carmit McMullen at Carmit.McMullen@kpchr.org.