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Day of Research and Engagement for the Community Markham, ILMarch 1, 2014

Aingyea Kellom, MPAProgram Associate, Patient Engagement

Ambassador Program - Introduction

About PCORIpcori.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.

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“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...”

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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…”

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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 researchguided by patients,caregivers and the broader health care community.

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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

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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?”

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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

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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)

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Study Design/ ImplementationEvaluation

Topic Selection and

Research Prioritization

Merit Review

We Engage Stakeholders at Every Step

What If I’ve Never Participated in Research Before?

PCORI Ambassador ProgramMerit ReviewEngagement Awards- Pipeline to ProposalsAdvisory PanelsWebinarsPCORI 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.

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-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 Yammer Community: Online

community that encourages the

exchange of best practices in different

communities

- Quarterly Ambassador Newsletter

Important Program Dates

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October 2012 September 2013

October2013

December 2013

March 2014

Program recommende

d by a

Transforming Patient-

Centered Research: Building

Partnerships and

Promising Models

workshop attendee

Inaugural Ambassadors 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.

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Ambassador Interest by Region and Ethnicity

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7%

16%

14%

30%

33%

Which of the following is your primary community?

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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

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Q & A

Aingyea Kellom, MPA Program Associate, Patient Engagementakellom@pcori.orgPhone: 202.827.7697Cell: 202.603.7453

Thank Your and Please Find Us Online

www.pcori.org

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