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Patient Engagement: The Future of Healthcare CommunicationsJuly 24, 2014

Bill SilbergDirector 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

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.

“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.

Our Strategic Goals

Influence Research Funded by Others

Speed the Implementation and Use of Evidence

Increase Quantity, Quality and Timeliness of Research Information

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)

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

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.

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.

Lessons Learned

Ask and listenLearn the languageFigure out what mattersAcknowledge patients’ expertise, value and “wisdom”Support and encourage but don’t try to controlBe transparentBe serious about a feedback loop

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Bill SilbergDirector of Communications, PCORIbsilberg@pcori.org

Thank You