About the Patient Engagement Toolkit
The Patient Engagement Toolkit offers materials to support researchers who want to engage with patients in conducting research. Our research team created these materials as part of the PORTAL project, which is no longer an active study.
PORTAL was funded by the Patient Centered Outcomes Research Institute (PCORI) to develop capacity for patient-reported outcomes research, and the PORTAL Patient Engagement Council (PEC) advised the project. The PEC was composed of 10 patients and representatives from patient advocacy groups from four Kaiser Permanente (KP) regions as well as from the Denver Health and Health Partners health systems.
PEC members offered their perspectives and guidance to researchers by participating in webinars, conference calls, and in-person meetings. The last major effort of the PEC was to create this Patient Engagement Toolkit to help other groups who want to engage with patients as they conduct scientific research.
When we began this work five years ago, patient engagement efforts were still relatively rare. We hope these materials will be useful to researchers who want to do similar work.
Section 1: Recruiting Patient Partners
Materials to help find patient partners and bring them on to a research project. You'll find:
Section 2: Training Patient Partners
Presentations we used to train our patient partners. These include:
Advocacy Stories: A two-part, 90-minute Webinar
Training Patient Partners- Advocacy Stories Part 1
With Florence Kurttila, PORTAL Patient Engagement Council
Training Patient Partners- Advocacy Stories Part 2
With Rick Puder, Adult Congenital Heart Association
Section 3: Offering Patient Engagement Services
Materials we used to tell researchers our patient partners were available to work on projects. You'll find:
Section 4: Collecting Patient and Scientific Partner Feedback