1 Day of Research and Engagement for the Community Markham, IL March 1, 2014 Aingyea Kellom, MPA Program Associate, Patient Engagement Ambassador Program - Introduction

About PCORI pcori.org

Why PCORI? Research has not answered many questions patients face. People want to know which treatment is right for them. Patients need information they can understand and use. 2 3

“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...” 4 PCORI Has a Broad and Complex Mandate -- from Patient Protection and Affordable Care Act

PCORI Is Accountable for Changing Practice -- from Patient Protection and Affordable Care Act “(g) FINANCIAL AND GOVERNMENTAL OVERSIGHT. … (2) REVIEW AND ANNUAL REPORTS. … (iv) Not less frequently than every 5 years … the overall effectiveness of activities conducted under this section … such review shall include an analysis of the extent to which research findings are used by health care decision-makers, the effect of the dissemination of such findings on reducing practice variation and disparities in health care…” 5

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. 2

7 PCORI’s Focus on Patient Engagement  Patient-centered  Answering questions that matter to patients and other clinical decision makers  Comparisons of outcomes that matter to patients Comparative Clinical Effectiveness Research

Strategic Goals Influence Research Funded by Others Speed the Implementation and Use of Evidence Increase Quantity, Quality and Timeliness of Research Information 4

Our Work Answers Patients’ Questions Given my personal characteristics, conditions and preferences… “What should I expect will happen to me?” “What are my options and what are the potential benefits and harms of those options?” “What can I do to improve the outcomes that are most important to me?” “How can clinicians and the care delivery systems they work in help me make the best decisions about my health and healthcare?” 5

Our National Priorities for Research Assessment of Prevention, Diagnosis, and Treatment Options Improving Healthcare Systems Communication & Dissemination Research Addressing Disparities Accelerating PCOR and Methodological Research 7

Our Growing Research Portfolio pfaawards.pcori.org

Our Growing Research Portfolio (as of January 2014) Total number of research projects awarded : 279 Total funds awarded: $464.2 million Number of states where we are funding research: 38 states (plus the District of Columbia and Quebec, Canada) 8

Study Design/ Implementation Evaluation Topic Selection and Research Prioritization Merit Review We Engage Stakeholders at Every Step

What If I’ve Never Participated in Research Before? PCORI Ambassador Program Merit Review Engagement Awards- Pipeline to Proposals Advisory Panels Webinars PCORI 101

Program Overview The volunteer initiative that trains, equips, and mobilizes patients, caregivers, organizations and other stakeholders to share PCORI’s vision, mission and PCOR principles with their respective communities, participate as full partners in research and to help assure the sharing and uptake of information generated from PCORI funded projects. 15 -Five modules of training focused on PCORI, their role, PCORI funding, and working in research teams - - Ambassador Toolkit Provides support material such as talking points, presentation template, PCORI One-pagers, social media guide, glossary of scientific terms, and PCORI’s Patient Engagement Rubric - - Ambassador Toolkit Provides support material such as talking points, presentation template, PCORI One-pagers, social media guide, glossary of scientific terms, and PCORI’s Patient Engagement Rubric -Ambassador Yammer Community: Online community that encourages the exchange of best practices in different communities -Quarterly Ambassador Newsletter -Ambassador Yammer Community: Online community that encourages the exchange of best practices in different communities -Quarterly Ambassador Newsletter

Important Program Dates 16 October 2012 Septem ber 2013 October 2013 Decemb er 2013 March 2014 Program recommende d by a Transforming Patient- Centered Research: Building Partnerships and Promising Models workshop attendee Inaugural Ambassador s invited to the join Program webpage launched and sent invites to merit reviewers, workgroup, roundtable, & regional event attendees Phase I of Training Live Module 1: Introduction to PCORI & Module 2: The Role of the Ambassador Phase II of Training Live: Module 3: Understandin g PCORI- Funded Research, Module 4: How PCORI- Funded Research Teams Work Together 1 & Module 5: How PCORI- Funded Research Teams Work Together 2 October 2014 June 2014 Annual Convening Open Program to the Public

PCORI Ambassador Perspective Benefits of Program: Receiving PCORI Ambassador communications tools and PCOR science training; Recognized as a “PCOR Science-Trained Ambassador” on the PCORI Ambassador webpage; Co-authored publications, submitted guest blogs, or participated in other media opportunities; Highlighted for work in patient-centered research in PCORI e-newsletters; Learning of opportunities to serve as PCORI reviewers or participate in working groups and on survey panels; and Collaborating and serving as a panelist with PCORI or others on events such as webinars, conferences, and panels. 17

Ambassador Interest by Region and Ethnicity 18 7% 16% 14% 30% 33%

Which of the following is your primary community? 19

Program Evaluation Evaluation of two populations:  Ambassadors Web Interest Form Activity Report Mid- and one-year survey  Organizations that hosted a PCORI Ambassador speaking engagement Activity Report Follow-up 20

Q & A Aingyea Kellom, MPA Program Associate, Patient Engagement Phone: Cell:

Thank Your and Please Find Us Online 30