AcademyHealth and Patient Advocate Foundation to Lead PCORnet® Engagement Coordinating Center

(Washington, DC) –The Patient-Centered Outcomes Research Institute (PCORI®), selected AcademyHealth  in partnership with the Patient Advocate Foundation, to serve  as the Engagement Coordinating Center (ECC) for PCORnet®, the National Patient-Centered Clinical Research Network, with the goal of increasing the capacity of patients, caregivers and community members to participate in and inform the nation’s clinical research.

The meaningful engagement of patients, caregivers, and community members in research undertaken through PCORnet is vital to ensuring these initiatives are focused on improving outcomes most important to patients. ECC activities will focus on facilitating collaborations and information sharing across the clinical research networks of PCORnet, and amplify promising engagement practices within PCORnet® Network Partners.

The lead organizations, AcademyHealth and the Patient Advocate Foundation, were selected by PCORnet Network Partners based on their expertise in engagement, organizational infrastructure, and extensive networks.

AcademyHealth, the leading professional association for health services and policy researchers, has built a portfolio of work supporting and fostering collaboration between consumers, patients, researchers, and delivery systems leaders to improve the relevance and application of health services research for better health. The ECC team will be led by Elizabeth Cope, PhD, MPH, senior director, public and population health, and Raj Sabharwal, MPH, senior director of strategic alliances. They offer a unique combination of subject matter expertise in health policy, health services research and health care delivery, as well as programmatic experience in scanning and synthesis, designing and providing technical assistance, translating science for practice and policy, and nurturing highly productive learning communities.  

“We are thrilled to partner on this important initiative with Patient Advocate Foundation,” said Cope. “AcademyHealth values the expertise of patients, caregivers and community members and believes their increased participation will have a transformative effect on the quality, equity, and relevance of research findings.”

Patient Advocate Foundation (PAF) is a national 501(c)3 non-profit organization that provides direct support to Americans with chronic, life-threatening and debilitating illnesses. Serving over 140,000 patients annually, PAF’s case management and financial programs are designed to provide a comprehensive and effective response to patients’ access and affordability needs.  With an extensive portfolio of health equity initiatives and health services research projects inspired and informed by patients, PAF captures and amplifies the patient voice to accelerate person-centered system and policy changes.

“If we want to answer questions that are important to patients, we have to actually involve them,” said Rebekah Angove, PhD, vice president of patient experience and program evaluation at the Patient Advocate Foundation, who serves as senior advisor of the ECC and will lead PAF’s efforts. “We’re looking forward to this new partnership, which will utilize our expertise on patient engagement as well as the experiences of the patients and caregivers we serve nationwide to generate more robust research and better outcomes.”

PCORnet is intended to improve the nation’s capacity to conduct patient-centered health research, particularly comparative effectiveness research (CER), efficiently by creating a large, highly representative network for conducting clinical outcomes research. PCORnet has been developed with funding from PCORI.