The Power Of Patient Engagement

Claire Diener, ESCALATES Communications & Dissemination Manager

 

EvidenceNOW aims to improve the ABCS of heart health in the patients of 1,500 small- to medium-sized primary care practices across the United States. One of the key means of accomplishing this goal in EvidenceNOW has been Practice Facilitation, though some Cooperatives have also engaged community resources and some, like EvidenceNOW Southwest, have opted to include patient engagement strategies in their work. ESCALATES wanted to see what others outside of EvidenceNOW are doing with patient engagement, so we reached out to the Patient and Clinician Engagement (PaCE) project of the North American Primary Care Research Group (NAPCRG) to learn what their members are working on.

 

In the rural foothills of the Appalachians, in Granite Falls, North Carolina, community member Ray Haeme and Dr. Ed Bujold, the leader of Granite Falls Family Medical Care Center, formed a patient-physician dyad through the PaCE project. This dyad formed a patient advisory council (PAC) with key members of the community, including the town’s police chief and recreation director, the director of a community-wide charitable organization, and patients who spanned the diversity of the community in terms of age and local geography. The PAC’s goals were to promote health education, provide feedback and input for delivery of healthcare, and develop capacity to engage patients, researchers and clinicians in comparative clinical effectiveness research to improve the delivery of primary care in their community. In their first year, the PAC was able to:

  1. Hand out flyers at nearby community festivals to encourage screening for Hepatitis C, colon cancer and diabetes.
  2. Establish a safe collection point for unused prescription drugs in the town’s police department.
  3. Submit (and be awarded) grant proposals to 1) identify and encourage screening for Hepatitis C for local populations without health insurance; and 2) develop the capacity to do clinical effectiveness research in their community.

The Granite Falls PAC is full of ideas and eager to make positive changes for the health of their community, and while some efforts will take longer to see results, Dr. Bujold wonders why he didn’t start a PAC long ago.

 

Across the country in Seattle, Washington, Dr. Emily Godfrey, a family physician with specialized training in reproductive health, was asked by her patient and friend, who has Cystic Fibrosis, “Why am I so sick around the time of my period?” After she attended a PaCE training where she learned about the Pathway to Proposal funding mechanism through PCORI, she had an “Aha!” moment; she figured out how she could engage patients with cystic fibrosis to work to fill the gap in the research around sexual and reproductive health issues for women with cystic fibrosis. With PCORI funding, Dr. Godfrey and her friend formed a patient workgroup of adult women with cystic fibrosis to participate in discussions to define sexual and reproductive health research priority areas. Through their work, they were able to identify six priority research areas:

  1. Improved care coordination between cystic fibrosis centers and primary care;
  2. Effective and satisfactory treatments for menopausal and perimenopausal symptoms;
  3. Improved pregnancy planning;
  4. Improved care during motherhood;
  5. Evaluation of health risks and benefits of hormonal contraception; and
  6. Improved management of mental health concerns surrounding body image and fertility issues.

The workgroup has since secured future funding from PCORI to further discuss rigorous patient-centered research questions related to cystic fibrosis sexual and reproductive health research priorities.

 

Drs. Bujold and Godfrey are two of many clinicians working with patients to improve the health of their communities. We believe that similar patient engagement efforts would be valuable for the EvidenceNOW practices and others interested in transforming their approach to care and suggest contacting PaCE leaders about methods for doing so.

 


Thank you to Ray Haeme, Ed Bujold, MD, and Emily Godfrey, MD, MPH who provided information about their exciting work with the Patient and Clinician Engagement (PaCE).