Meet Our Patient Engagement Advisory Panel

Two parents who have cared for children who needed heart transplants. A patient advocate with Parkinson’s disease. A community organizer focused on helping minorities and the underserved. A man who has served as his wife's caregiver for 44 years and a woman who cared for her mother during her battle with cancer. A fifth-generation breast cancer survivor and an ovarian cancer survivor.

Panel member Perry Cohen was diagnosed with Parkinson’s disease in 1996. A public health and medical research expert, he established the Parkinson Pipeline Project to provide the patient perspective in the treatment development process.

These eight individuals come from different backgrounds and different parts of the nation. They represent many professions. Many have been inspired to pursue careers in health care to help others and bring hope, meaning, and purpose to the personal and family journeys they continue each day.

Every one of them knows what it means to be a patient or a caregiver. They have navigated the healthcare system, addressed acute and chronic care issues, and sought answers to critical questions that affect daily living and life itself. They understand the value of reliable health information and know the despair that comes when there aren't sufficient answers to the questions they and others have about care, options for treatments, and the outcomes we can expect.

Bruce Hanson has served as a caregiver for more than 40 years for his wife, a diabetic who had a kidney transplant followed by a massive stroke and breast cancer. A minister, he’s active with the National Patient Advocate Foundation.

They are all members of PCORI’s newly formed Advisory Panel on Patient Engagement. They’re joined by representatives of the Asthma and Allergy Foundation of America, Families USA, LymeDisease.org, the National Health Council, the Partnership to Improve Patient Care, and the Patient-Centered Primary Care Collaborative.

These six organizations bring additional viewpoints that capture the broad perspectives of patients and caregivers across the healthcare spectrum. Collectively, they represent and can help reach hundreds of additional organizations and millions of individuals, as we at PCORI expand our efforts to work with patients, caregivers and advocates at the individual, group, local and national levels.

Together they make up 60 percent (13 of 21 members) of our patient advisory panel. With their wisdom, experience and expertise, they will collaborate with eight additional individuals representing clinicians, industry, policymakers, and researchers to ensure the highest patient engagement standards and a culture of patient-centeredness in all aspects of our work. Specifically, as outlined in the panel’s charter, they will:

• Advise on processes to identify research topics and priorities that are important to patients.
• Advise on all aspects of stakeholder review of applications for PCORI funding.
• Provide general recommendations to PCORI and externally on the conduct of patient‐centered research.
• Advise on methods to evaluate the impact of patient engagement in research.
• Assist and advise PCORI on communications, outreach, and dissemination of research findings.
• Provide advice on other questions and areas of interest relevant to PCORI’s mission and work.

As PCORI’s director of patient engagement, I am excited for the opportunity to work with all of these panel members. Each brings a unique perspective and qualities that will serve us well as we develop, implement, evaluate and refine our engagement programs across PCORI’s research portfolio. Collectively, they will broaden the depth and quality of input that informs our strategic and daily work.

Panel member Regina Greer-Smith is a patient advocate in the Chicago area. She builds and maintains collaborations between communities and stakeholders that enable improved health outcomes. She has a strong commitment to minority and underserved communities.

I look forward to meeting these panel members when they gather in the Washington, D.C., area April 19-20 for our training and kickoff meeting. Their initial discussions will be open to the public via a teleconference line. I hope you'll join us and provide feedback. Our patient engagement and other advisory panels are just one way we are working to fulfill our mission of “producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader healthcare community.”This is just the beginning.

There are many ways for you to get involved personally in our work. Your voice, and the voices of our panelists and other individuals who together through our many events and activities, will create the complete, representative picture we need to identify and answer the questions that matter most to patients and those who care for them.