The Patient and Community Engagement Resource (PACE)
There is a long history of mistrust between researchers and communities of color and under-resourced communities. This mistrust is the result of researchers historically using research participants as "subjects" for research and not treating them as participants, partners, or consumers of research.
Mistrust is a major hurdle to advancing precision medicine. If patients do not understand why and how data about them or their families is being used in research, they are reluctant to say "yes" when asked to participate. This dynamic is changing as patients and communities are becoming more empowered and engaged in their health care decisions. But many researchers lack training in how to conduct research in partnership with patients and other stakeholders. Many are unaware of the privilege they receive for being scientists, grant recipients or clinicians. That blindness prevents them from addressing historic trauma, closing disparities gaps and attaining health equity.
PACE is co-lead by an academic researcher and a patient research advocate. Together, these two colleagues bring real-world, patient- and community-informed practices to the KIPM COBRE.
- mentoring sessions for researchers;
- educational opportunities on successful patient/community-researcher engagement strategies;
- access to a KIPM Community Advisory Board (CAB), which provides feedback to researchers on their studies and patient- and community-centered perspectives to further productive engagement;
- linkages to community organizations and thought leaders crucial to recruiting and involving diverse people; and awareness-raising opportunities offered by the community about the community.
Cheryl L. Jernigan, CPA, FACHE
Survivor of Breast Cancer, co-survivor of HPV Tonsil Cancer and Metastatic Prostate Cancer
Lead Patient Advocate and Co-Leader, Patient and Community Engagement Core, Kansas Institute for Precision Medicine COBRE
Lead Patient Advocate, Patient and Investigator Voices Organizing Together, The University of Kansas Cancer Center
Lead Patient Advocate, Greater Plains Collaborative, University of Kansas Medical Center
Lead Patient Advocate and Co-Leader, Patient Partners group, Frontiers: University of Kansas Clinical and Translational Science Institute
Kim S. Kimminau, Ph.D.
Professor, Department of Family Community Health, University of Kansas Medical Center
Associate Director, Frontiers: University of Kansas Clinical and Translational Science Institute
Co-Leader, Patient and Community Engagement Core, Kansas Institute for Precision Medicine COBRE
Contact KIPM_COBRE@kumc.edu to schedule time to discuss patient- and community-related research support needs.
On Trust, Coffee Machines, and Researchers
Commentary by the Precision Medicine and Health Disparities Collaborative (PMHDC) Implementation Core on edgeforscholars.org website.