PCORI Ambassadors: Building an Empowered Research Community

October 25, 2013 by Anne C. Beal, MD, MPH; Sue Sheridan, MIM, MBA; Aingyea Kellom, MPA

Aingyea Kellom headshotSue Sheridan headshotAnne Beal headshotOur patient-centered research portfolio is guided and refined by patients and other members of the healthcare community who want to share their experiences and perspectives to make research more relevant for those who will directly benefit from its findings. So we are pleased to tell you about the latest example of this commitment—our new PCORI Ambassador Program.

This initiative, announced at the recent meeting of our Advisory Panel on Patient Engagement, focuses on building a national network of patients, stakeholders, and stakeholder organizations equipped to participate in our work. PCORI Ambassadors will be informed volunteers who, although they will not speak or act officially on PCORI’s behalf, will engage individuals and organizations easer to help us achieve three strategic goals:

  • Create a diverse community of patients and other stakeholders who have the desire and training to participate in research.
  • Engage this community in research.
  • Disseminate and promote the implementation of research findings.

A Bigger Welcome Mat

We established the PCORI Ambassador Program to address a major challenge in our inclusive approach to health research. We emphasize meaningful involvement of patients and other stakeholders throughout the research process, including helping to determine what should be studied in PCORI-funded projects and what outcomes should be measured. However, many patients and other stakeholders are not accustomed to being invited into the research process this way.

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Ambassadors’ activities will include building relationships with local and national leaders, encouraging community organizations and their affiliate members to participate in our work, building or contributing to online social networks where information about PCORI can be shared, collaborating on live and virtual events, delivering presentations, and contributing as guest bloggers in appropriate forums. The Ambassadors themselves also will have opportunities to participate as full partners in health research and help share and promote the use of information generated from PCORI-funded projects.

PCOR Guiding Principles

To assist their efforts, we’ll provide Ambassadors with communications tools and training so they become recognized as knowledgeable about our work and the growing field of patient-centered outcomes research, or PCOR.  In addition, we are giving volunteers a framework to facilitate their outreach to the community. We call this framework “the PCOR principles,” which include co-learning, trust, partnership, transparency, and respect. Ambassadors will be asked to honor these principles in all facets of their work with us. 

Our first Ambassadors will be patients, caregivers, advocacy organizations, clinicians, researchers and other stakeholders who are members of our Advisory Panel On Patient Engagement and so are already active in our work.

They will work with us to train and mobilize new participants and to promote PCORI’s work in their respective communities.

We will then solicit volunteers from the community of individuals and organizations that have been involved in one or more previous PCORI events or activities. In 2014, we will expand training to those who are interested in becoming a PCORI Ambassador but have not yet had the opportunity to participate in PCORI activities.

A Grassroots Idea

Fittingly, the inspiration for the PCORI Ambassador Program came from a participant in one of our patient and stakeholder workshops. At the close of an energizing two-day event in October 2012 in Washington, DC, one workshop participant noted that the enthusiasm of the group could be influential in promoting patient-centered research. One of the key recommendations that emerged from the workshop was the concept of an ambassador program.

The PCORI Ambassador Program is one more demonstration of the value the institute places on receiving input and soliciting participation from the public. The complexity and diversity in the healthcare system makes it difficult for PCORI to reach a large community of patients on its own. By leveraging the passion of patients, caregivers, clinicians, payers, policy makers, industry representatives, employers and other stakeholders, we can ensure that our work incorporates the varying perspectives of the healthcare community across the country.

We are excited to build a network of individuals and organizations eager to have a hands-on role in research that will improve patient outcomes. If you are interested in becoming a PCORI Ambassador or want to get involved in our work in another role, we encourage you to visit www.pcori.org/getinvolved or email Aingyea Kellom (ambassadors@pcori.org).

Beal served as PCORI’s Deputy Executive Director and Chief Officer for Engagement from November 2011 – March 2014
Sheridan is PCORI’s Director of Patient Engagement
Kellom is PCORI’s Patient Engagement Project Associate and Ambassador Program Lead

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