JANUARY 20, 2017 BY MOLLY SKUBAK

Happenings: Stakeholder Meeting at Temple

On September 14, PaTH researchers, clinical champions, health system leaders, informatics experts, and patient partners gathered at Temple University in Philadelphia for a Stakeholder Engagement meeting. The goals of the meeting were to have PaTH members from different sites and roles work together to identify PaTH’s unique qualities and brainstorm ways to capitalize on its strengths.

"This meeting allowed for diverse stakeholders of all levels – from patients to researchers to IT specialists and more – to make their voices heard and collaborate on PaTH's future," says Megan Hamm, Ph.D., a Senior Research Specialist at the University of Pittsburgh’s Qualitative, Evaluation and Stakeholder Engagement Research Core who helped facilitate the meeting.

"It’s important to bring everyone together, face-to-face, to facilitate conversations that might not otherwise take place," says Louisa Stark, Ph.D., a Community Engagement Specialist for PaTH. Dr. Stark presented at the meeting and was instrumental in planning it.

"Meetings of this sort encourage collaboration, understanding, and successful cooperation of team members, and have become increasingly important for the success of projects both large and small," says Dr. Hamm.

Heather Coulter, M.Ed., also a PaTH Community Engagement Specialist who helped plan and facilitate the meeting, agrees.

"For research to move forward and have the momentum and impact we all hope for, it’s truly key to improve the health of all people," she says. "In order to do that, we need to make sure everyone’s around the table and all perspectives of people impacted by the work are heard and represented."

To kick off the meeting, attendees heard from patient partners and engagement specialists who had, prior to the meeting, spoken with patient partners from other Clinical Research Networks (CDRNs). These conversations focused on the patient partners’ experiences with their networks, the unique qualities of each CDRN, and their approaches to patient engagement. Those who participated in these conversations shared what they learned about stakeholder engagement across PCORnet, ways in which PaTH’s approach is unique, and potential ways PaTH can improve as a network.

Next, everyone divided into groups to discuss ways to capitalize on PaTH’s strengths and ensure network sustainability. Each group was comprised of diverse network members (for example, researchers, patient partners, clinical champions, and informatics specialists) to promote learning across different perspectives. After the groups had a chance to discuss their topic points, a representative from each group presented on their findings, and, together, everyone discussed the insights discovered in the breakout groups. Many found the following to be unique strengths of PaTH:

• The partnerships between researchers, clinicians, and patients
• The PaTH Future Research Topics process, which goes beyond orienting researchers to PaTH resources by providing input on study design and whether proposed plans are consistent with institutional and clinical norms at the different PaTH sites
• Patients’ involvement in the PaTH Network Protocol Review Committee, which works with Institutional Review Board members to ensure studies are ethical and patient-centered
• PaTH’s close collaborations between clinicians and informatics experts

Dr. Stark says some important opportunities for growth that were discussed include determining ways to publicize PaTH’s work and educating patients and community members on the research process as well as the various ways they can participate in it.

Findings from the patient partner interviews will be shared with the participating patient partners’ networks. Ideas about PaTH’s unique strengths and ways to leverage these strengths in PaTH’s sustainability planning were built upon over the next day and a half during the PaTH Steering Committee meeting, which convened immediately after the Stakeholder Engagement event.

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