The Patient Engagement Studio is a consultative session for researchers interested in getting input on their work from patients, caregivers, health care providers, community members and other non-researcher stakeholders. A panel of stakeholders, whose characteristics are defined by the researcher, will be assembled to provide feedback to enhance the planning, design, implementation, translation or dissemination of your research.
- To add patient and community stakeholder perspective to research
- Include patients as patient “scientists”
- Strengthen the quality and relevance of our research
- Establishing credibility
- Anticipating controversy
- Ensuring transparency and accountability
- Improving relevance
- Enhancing quality
- Increasing dissemination and uptake of findings
Expectations for Researchers
- Submission of a short 8-10 slide power point presentation provided to Studio director 2 weeks prior to scheduled Studio presentation
- Use language that patients can understand.
- Include 3-4 specific questions for patient experts on 2nd to last slide.
- Last slide should include all researchers involved with the study, their degrees, their institutions, and their departments.
- Attendance at scheduled session presenting no more than 30 minutes – most of the session involves patient feedback and discussion
- Willingness to receive feedback and suggestions from the patient experts, yet not all suggestions need to be incorporated into projects
- Inclusion of studio funding in preparation of external grants that will continue use of patient studios
- Consideration of ongoing studio use throughout your project while conducting the project and also in disseminating results.
- The Primary Investigator needs to be in attendance.
Researcher Expectations from the Studio
- Provision of feedback on initial power point prior to presentation
- Limited interruptions during studio presentations except for clarification questions
- Expression of honest and transparent patient and other studio member opinions about the study at hand
- Receipt of written report, based off the PCORI rubric within 3 weeks of the presentation or session notes