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Engaging patients and other healthcare stakeholders in the research process is a fast-growing trend. We are truly seeing a culture change as more clinical scientists recognize the value of incorporating patient and other stakeholder perspectives to make their research more relevant and feasible and its findings more useful. In addition, various funding organizations have begun engaging patients in reviewing research proposals and other activities. But the trend is still relatively new, and few resources are available to guide these important efforts.

“It has often felt as though my colleagues and I have been on an island as we wrestle with issues that arise,” says Kendall Bergman of Susan G. Komen®. She speaks for many about a challenge that we at PCORI find very familiar. So to build connections between groups that fund patient-engaged research—and to team up on developing the most effective approaches—we recently hosted a roundtable focused on patient engagement in the conduct of research and review of project proposals. Participants considered current engagement practices, including training of participants, how these practices are being evaluated, and how they can be strengthened. To our knowledge, this was the first gathering of public and private funders to address these topics.

Creating a New Community

The most important outcome of the roundtable is that it created a sense of community among those involved in funding patient-engaged research. Bergman says, “It was great to be with a group of incredibly dedicated and brilliant individuals thinking through similar issues around patient engagement.”

Says Al Richmond of Community Campus Partnerships for Health, “The roundtable exceeded my expectations, as it provided a global perspective on patient/consumer engagement.”

The group enthusiastically agreed on the importance of continuing to build this community and facilitate exchange of ideas and partnerships. By sharing what we know and the processes we have established, we will fill gaps, bridge silos, and collectively develop new knowledge. By the end of the roundtable, participants were looking forward to creating a listserv or other mechanism for maintaining their connections and inviting other funders of engaged research to join the community.

Building this community will not only help PCORI advance its own stakeholder engagement practices but also contribute toward one of our strategic goals: influencing clinical and healthcare research funded by others to be more patient-centered. We recognize that we can’t answer all of the important healthcare questions by ourselves, so we endeavor to encourage other funders to take a patient-centered, stakeholder-driven approach to research. Because PCORI has more staff and resources than many other funders for developing and evaluating engagement processes, sharing what we learn—and are learning from others--will help improve the overall quality, relevance, and usability of the nation’s clinical research output.

Facing Tough Issues

By facilitating communication among funders, we want to not only share promising practices currently available but also tackle tough engagement issues. Bergman says that she sometimes feels like a broker between patients and researchers, sometimes like a public relations expert, and sometimes like a therapist. She adds that the roundtable, in part, lifted that burden by putting her in touch with creative people at other organizations who are trouble-shooting similar issues.

Some of the difficult issues raised at the roundtable included ensuring the legitimacy of engagement and preventing tokenism, managing the logistics and cost of engagement, and knowing how and where to find patient and other stakeholder partners.

When organizations face a tough issue, it’s helpful to reach out to others with similar dilemmas. We need to share failures as well as successes. The roundtable participants expressed strong interest in becoming resources for each other.

Working Together

We can be most effective if we all take advantage of what others have learned about engagement in research and the evaluation of those efforts. By working in concert, we can most effectively advance these fields.

One area of urgent interest is training: we want to assess the spectrum of patient, other stakeholder, and researcher needs. We would then determine what sorts of training are now available and what must yet be developed. Roundtable participants noted that some organizations have created training programs and recommended the establishment of a bank of such resources that all funders could access. Says Bray Patrick-Lake of the Clinical Trials Transformation Initiative, “We need a matrix and menus of training modules, then you can find the solutions for your community.”

Another area that would benefit from cooperation across funders is measurement of the impact of patient engagement and the value of its various components. PCORI has invested heavily in such assessment. The roundtable participants plan to form a working group focused on evaluation of engagement.

Sharing Findings

Learning about all of the engagement activities going on among the participants spawned a dialog about how to make others aware of this work. The participants called for a mechanism to share what is being learned about the engagement of patients and other stakeholders throughout the research process. They suggested forming writing groups on a variety of topics and identifying opportunities for publication.

The participants also expressed their eagerness in taking what they had learned back to their own organizations, as well as keeping up the connections born at the roundtable. Bergman says, “I returned home with a renewed commitment to my work and the possibilities of what we can accomplish together.”

What's Happening at PCORI?

The Patient-Centered Outcomes Research Institute sends weekly emails about opportunities to apply for funding, newly funded research studies and engagement projects, results of our funded research, webinars, and other new information posted on our site.

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