Building a Sustainable PCO and PCOR Community Network to Achieve Patient, Researcher, and Clinician Partnerships

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Meaningful patient engagement in health outcomes research remains difficult for many communities. In Utah, understanding of the value of patient-centered outcomes research by patients, providers, and researchers is still in its infancy, and will only improve using a community-driven approach.

The project team will be building on the success of the 2016 Health Services Research (HSR) Meeting, “Bringing Patient Voices to Research,” where 50 community members joined 80 researchers to talk about patient-centered care and outcomes, develop the skills of interested community members to provide input to research groups, and train researchers to meaningfully engage with diverse communities.

In a series of workshops, the team will train researchers as part of the 2017 HSR Meeting to develop meaningful, sustainable partnerships with community groups using curriculum co-developed by the successful Community Faces of Utah (CFU), a diverse set of community partners, and the Utah Center for Clinical and Translational Science (CCTS). The team will also hold a live studio where a research team will receive in-person facilitated feedback on their research topic from community members. In the second year, CFU and CCTS will co-develop and conduct a community-based training for two organizations interested in partnering with researchers.

The project team aims to improve understanding and engagement on the value of integrating patient-centered outcomes research in the healthcare community from the patient, provider, and community perspectives; develop the capacity of the Utah research community to engage stakeholders meaningfully; increase opportunities for communication through a public website that connects researchers and trained communities; and ultimately succeed through increased PCORI application submissions on areas of need for Utah patients.

The investigators will develop workshops with curriculum materials for researchers and communities, launch the website, track its use, videotape the studio as a resource and advertisement for patient engagement opportunities for researchers, and share the status of results of current PCORI work in Utah. Through the annual HSR Meeting, the team will reach more participants and continue to raise awareness of this work in Utah. The results will show increased use and participation related to the resources provided and lead to more engagement events, successful applications, and awards to Utah partners.

This application was developed with patients and patient advocacy representatives, three healthcare providers, and four researchers who remain in the event steering committee. Additionally, members of the planning meetings are faculty for the workshops being developed and PCORI awardees. CFU is a collaboration among existing community groups that represent minority communities in Utah and is co-developing researcher and community workshops and guides. Salt Lake Interfaith Roundtable represents many cultural and spiritual minorities in our community. Finally, HealthInsight engages patients and their families monthly through our Patient and Family Advisory Council. All event topics and website content will be reviewed by this group to ensure they meet the needs of a wide spectrum of patients and stakeholders. This project is a collaboration between HealthInsight, Community Outreach and Collaboration Core of the Utah Center for Clinical and Translational Science, Salt Lake Interfaith Roundtable, Health System Innovation and Research Program, Utah Health Policy Project, and Intermountain Healthcare.