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Kansas Institute for Precision Medicine COBRE

Research > KIPM > Patient and Community Engagement Resource

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.

PACE offers:

  • mentoring sessions for researchers;
  • educational opportunities on successful patient/community-researcher engagement strategies;
  • access to patient research advocates who offer feedback to researchers on their studies and provide patient- and community-centered perspectives to further productive engagement;
  • connections with community organizations and thought leaders crucial to recruiting and involving diverse people; and
  • awareness-raising opportunities offered by the community about the community.

PACE Team

Cheryl Jernigan
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

Hope Krebill
Hope Krebill, MSW, BSN, RN

Assistant Director, Outreach, The University of Kansas Cancer Center
Executive Director, Masonic Cancer Alliance
Co-Leader, Patient and Community Engagement Core, Kansas Institute for Precision Medicine COBRE
Email: hkrebill@kumc.edu

Sara Douglas

Sara Douglas, MSN, RN, OCN
Co-Leader, Patient and Community Engagement Core, Kansas Institute for Precision Medicine COBRE
Primary Care and Community Research Network Manager, Masonic Cancer Alliance
Patient and Investigator Voices Organizing Together (PIVOT) Program Manager
Email: sdouglas3@kumc.edu

Contact

Contact KIPM_COBRE@kumc.edu to schedule time to discuss patient- and community-related research support needs.

Additional Resources

On Trust, Coffee Machines, and Researchers
Commentary by the Precision Medicine and Health Disparities Collaborative (PMHDC) Implementation Core on edgeforscholars.org website.

Advocate ↔ Researcher Working Together Toolkit
This toolkit was created by Susan G. Komen's Advocates in Science (AIS). With Komen's permission, Patient and Investigator Voices Organizing Together (PIVOT) have adapted the toolkit for use at The University of Kansas Cancer Center (KUCC). The purpose of this toolkit is to assist researchers and advocates seeking to work together on research projects.

Last modified: Jan 15, 2021
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