PCORI Reaches into the Heartland: Thoughts from our Wichita Workshop

At PCORI, we're serious about staying connected to the diverse community of patients and other healthcare stakeholders who we count on to guide our work. We’ve convened Board meetings, workshops, roundtables and focus groups in 20 cities across the nation in the last two years.  But  until last month, we hadn't hosted an event that focused on rural health.

That changed with our most recent workshop, in Wichita, Kan., March 9-10, where we  introduced ourselves and our work to a new set of stakeholders who know personally or professionally the health challenges faced by those living in rural settings.

The two-day event was attended by more than 80 participants representing each of our stakeholder groups; more joined via webcast. It accomplished three objectives:

• Accelerated the growth of PCORI’s robust stakeholder community.
• Invited fresh input into our work.
• Built partnerships that we hope will lead to patient-centered research projects.
   

We opened the workshop with an introduction to PCORI from our leadership team. Executive Director Joe Selby and Sue Sheridan, our Director of Patient Engagement, described how we define patient-centered research and our unique approach to engagement.

In helping to address what “patient-centered research” looks like, Wichita family physician Rick Kellerman explained, “health care and medical care is a team sport. So, it’s nurses, it’s physician assistants, it’s the pharmacists, it’s the CNAs [certified nursing assistants] and the patient is part of the team. So, we’ve got to look at that whole team.”

We continue to seek the community’s feedback on what "patient-centered" means to them. Everywhere we go, patients, clinicians and advocates alike affirm the team-oriented approach, where patients are invaluable members.

Chad Boult, who oversees our Improving Healthcare Systems research program, explained how we solicit and address patient-centered research topics and the process we use to prioritize them.

The idea of becoming directly involved in healthcare research is often complicated and intimidating for those who lack prior research experience. So we invited two panels of patients and other stakeholders to share personal experiences of how they’d gotten involved in our work.

For example, a community leader and a researcher from Colorado talked about their successful efforts to bring ranchers and others together around chronic illnesses – making sure they didn’t hold meetings during calving time. The goal was to help those interested find ways that they, too, can participate in patient-centered research in their own communities. Then, we gave the patients and researchers time to discuss common interests that might be explored through collaborative projects.

Collaboration and future partnerships are just one tangible outcome we want to see from this event. We hope our time in Wichita leads to greater representation from the Midwest and Central Plains in all of our initiatives, including our ranks of stakeholder reviewers, our planned Ambassadors and Engagement Awards programs, applications for future advisory panels, and public comments. In the days immediately after the event, we were already getting emails from workshop participants wanting to become more involved in our work.

We’re also seeking more funding applications that address the questions most important to rural or underserved populations. Part of the workshop agenda was dedicated to explaining our funding processes, including how to apply and how we select projects to support.  The researchers in the room told us they appreciated getting greater clarity on how to apply for funding in the future. We hope to do an even better job at that so we can increase the volume and quality of the proposals we receive and be able to fund more of them.

Another portion of the workshop was spent talking about the specific health challenges facing people in the Midwest and Central Plains. Those challenges include:

• Aging in place in rural settings.
• Access to health care providers.
• Care coordination, particularly for chronic conditions.
• Agromedicine and work-related injuries.

Our authorizing legislation calls for us to support research that considers specific subpopulations; the rural health community is one of those. Engaging patients and those who care for them in the Midwest and Central Plains, as we did in Wichita, will help us better incorporate the perspective of this important and underserved group.

We very much appreciate the time and energy all participants brought to Wichita. We’re now sorting through their comments to determine how we can use their input to guide our work. In the next few months, we’ll follow up with participants to find out how they’ve become involved with PCORI.

Workshops like this one demonstrate our commitment to engaging all the perspectives needed for effective patient-centered research. We are scanning the map to see where we should go next.

We’re interested in your thoughts on how workshops like this one can help guide our work. Watch the archived webcast of the Wichita event and send along your suggestions.

Martin is PCORI’s Deputy Director of Stakeholder Engagement
Schrandt, JD, is PCORI’s Deputy Director of Patient Engagement