The Patient-Centered Outcomes Research Institute (PCORI) hosted a workshop to bring together consumers, patients, caregivers, advocacy groups, researchers and other stakeholders in an effort to start building a patient-centered research community.
The event, Transforming Patient-Centered Research: Building Partnerships and Promising Models, was a highly energized gathering of 150 patients and healthcare advocates to develop ideas, provide feedback, build community and help PCORI generate guiding principles that ensure our work is patient-centered from beginning to end. It also sought to connect audiences that might not otherwise have the chance to work together.
PCORI’s mission is to help people make informed health decisions by producing reliable, evidence-based research that is guided by patients, caregivers and the broader healthcare community. While the over-arching objectives of the workshop were to advance this mission overall and begin building a community that continuously furthers this work, the workshop also engaged participants in action on five key focus areas:
Identifying and Selecting Research Questions
– How should PCORI identify and select specific research questions for funding that are patient-centered?
Reviewing Research Proposals for Funding
– How can PCORI effectively engage and use the real-world experience of patients to help evaluate research proposals we receive?
Matching Patients and Stakeholders with Researchers
– How can PCORI connect patients and stakeholders with researchers for collaborative work that ensures studies reflect patient perspectives?
Disseminating Research to the Community
– How do we ensure that patients and those who care for them can access and use PCORI’s research to make more-informed decisions?
Evaluating PCORI’s Patient and Stakeholder Engagement Programs
– How can PCORI measure the effectiveness of its programs to involve patients and stakeholders throughout its work?
For more information about the workshop, download a copy of the agenda, read more about the workshop’s five areas of focus, and get to know the participants as well as the presenters and facilitators.