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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Patient Engagement: The Future of Healthcare Communications
July 24, 2014
Bill Silberg
Director of Communications, PCORI
Talking About Research Results:
Patients are our Partners

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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

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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?

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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?

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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

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Bill Silberg
Director of Communications, PCORI
bsilberg@pcori.org
Thank You