Talking About Research Results – Patients are Our Partners - BDI 7/24 Patient Engagement: The Future of Healthcare Communications Summit & Roundtables

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Presentation: Talking About Research Results – Patients are Our Partners …

Presentation: Talking About Research Results – Patients are Our Partners
Presented by: Bill Silberg, Director of Communications, Patient-Centered Outcomes Research Institute
Clinical researchers and other healthcare professionals increasingly are embracing the notion of “patient-centeredness” in guiding their work. At PCORI, we go further, requiring not only that the research proposals we fund be patient-centered – that is, address questions and outcomes relevant to patients – but that patients and other healthcare stakeholders be real and meaningful partners with researchers throughout the study process. That includes how the research results are disseminated. Bill will talk about the opportunities and challenges PCORI sees in this approach to “research done differently” and discuss lessons learned to date.

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  • 1. 1 Patient Engagement: The Future of Healthcare Communications July 24, 2014 Bill Silberg Director of Communications, PCORI Talking About Research Results: Patients are our Partners
  • 2. 2 Disclaimer and Disclosure The views expressed in this presentation are my own and not necessarily those of PCORI PCORI has funded my appearance here; I have received no outside support
  • 3. About PCORI An independent research institute authorized by Congress through the Affordable Care Act. Funds comparative clinical effectiveness research (CER) that engages patients and other stakeholders throughout the research process. Answers real-world questions about what works best for patients based on their circumstances and concerns.
  • 4. “The purpose of the Institute is to assist patients, clinicians, purchasers, and policy- makers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed through research and evidence synthesis...and the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of the medical treatments, services...” We Have a Broad and Complex Mandate -- from Patient Protection and Affordable Care Act of 2010
  • 5. 5 Research hasn’t answered many questions patients (and their clinicians) face. People want to know which treatment is best for them. Patients and their clinicians need information they can understand and use. Why PCORI?
  • 6. 6 Our Mission PCORI helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community.
  • 7. Our Strategic Goals Influence Research Funded by Others Speed the Implementation and Use of Evidence Increase Quantity, Quality and Timeliness of Research Information
  • 8. Funded Projects to Date Total number of research projects awarded : 280 Total funds awarded: $464.2 million Number of states where we are funding research: 39 states (plus the District of Columbia and Quebec, Canada)
  • 9. Goals of Engagement as a Path to Useful, High-Quality Research – and Beyond Promote Dissemination and Implementation Engage the PCOR Community in Research Build a Patient-Centered Outcomes Research (PCOR) Community
  • 10. Review, Design, and Conduct of Research Dissemination and Implementation of Results Topic Selection and Research Prioritization Evaluation ENGAGEMENT What Does Meaningful Engagement Mean?
  • 11. 11 Why Partner With Patients in Communicating About Research? As “end-users” of the research we fund, patients are among the key audiences we are charged with serving. Patients need to trust not just their clinicians but the information their clinicians use in laying out clinical options. That information also must be useful, relevant and speak to patients’ health and healthcare questions and concerns. An engaged patient (and caregiver) community offers researchers, clinicians, policymakers and others a wealth of experience and expertise about their own conditions. Patients increasingly are trusted and effective resources for and conduits to other patients.
  • 12. How Do We Partner With Patients in Our Communications Efforts? Advising on the kinds of information patients (and caregivers) seek and the most effective ways to deliver it. Working with individuals and advocacy groups to extend our communications reach through their own channels. Featuring patient and caregiver “stories” on our website. PCORI Ambassadors – trained to understand our work and explain it to peers (though not official spokespeople). Encourage authorship of blog posts, op-eds, commentaries about their experiences with PCORI and its work. Collaborating on social media activities that can advance our work.
  • 13. Lessons Learned Ask and listen Learn the language Figure out what matters Acknowledge patients’ expertise, value and “wisdom” Support and encourage but don’t try to control Be transparent Be serious about a feedback loop
  • 14. 14 Bill Silberg Director of Communications, PCORI bsilberg@pcori.org Thank You