Transforming Patient-Centered Research: Building Partnerships and Promising Models
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.
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?