AMBASSADOR PROGRAMWORKSHOP WORKBOOK

1@PCORI | #PCORI | PCORI.ORG

PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE

Become a PCORI Ambassador

July 2020

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TABLE OF CONTENTS Opportunity Snapshot ....................................................................................................................... 3

About PCORI ........................................................................................................................................ 4

Ambassador Program History ........................................................................................................... 5

Ambassador Program Framework ................................................................................................... 6

A Quick Snapshot of Current Ambassadors .................................................................................. 7

Ambassador Program Offerings ....................................................................................................... 8

Join the Ambassador Program ........................................................................................................ 10

Frequently Asked Questions (FAQs) ............................................................................................... 11

Ambassador Program Membership Guidelines ........................................................................... 12

Glossary ............................................................................................................................................. 13

Acknowledgements .......................................................................................................................... 14

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OPPORTUNITY SNAPSHOTConsider joining this national movement to make health research more relevant, patient centered, and useful to all communities across the United States!

PCORI is recruiting for its Ambassador Program, a volunteer network of individuals dedicated to changing the culture of health research to be more patient centered. In their communities and nationally, PCORI Ambassadors are shifting how research is being done by partnering with researchers, leading engagement initiatives, setting priorities, and spreading the word about the importance of stakeholder-engaged research. With connections to groups with different interests, Ambassadors play an important role in sharing research results with the people who benefit most. By working collaboratively with Ambassadors, PCORI meaningfully incorporates a diversity of perspectives in its work and the research it funds.

PCORI recognizes the value of its Ambassadors and their critical role in building capacity to engage their communities in PCOR, and to act on PCORI-funded research evidence. With the power of Ambassadors’ voices, PCORI can partner with members to promote and share relevant PCORI-funded research evidence in their communities and build PCOR infrastructure.

The information provided in this Welcome Packet is intended to help inform interested individuals about the various activities available to them through the Ambassador Program. The Welcome Packet also provides information about Ambassadors’ role, engagement opportunities, program benefits, and other offerings.

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ABOUT PCORI The Patient-Centered Outcomes Research Institute (PCORI) was authorized by the Patient Protection and Affordable Care Act of 2010 as a nonprofit, non-governmental organization, charged with helping patients, clinicians, purchasers, and policy makers make better-informed health decisions by “advancing the quality and relevance of evidence about how to prevent, diagnose, treat, monitor, and manage diseases, disorders, and other health conditions.” PCORI does this by producing and promoting high-integrity, evidence-based information born out of research guided by patients, caregivers, and the broader healthcare community. Therefore, PCORI champions the best available evidence to help patients and those who care for them make better-informed healthcare decisions. In 2019, Congress passed legislation reauthorizing funding for PCORI and amending the original authorizing statute.

PCORI identified seven cross-cutting national priorities where additional health research is needed to give patients and those who care for them more information to support decision making. PCORI’s National Priorities can be applied to and used to advance the quality of information for any health condition or disease where evidence is lacking, or current decision making is suboptimal. The five priorities were developed in light of PCORI’s legislative requirements, its working definition of patient-centered outcomes research (PCOR), and previous research prioritization efforts.

PCORI is committed to transparency and a rigorous stakeholder-driven process that emphasizes patient engagement. PCORI fulfills this commitment by obtaining input from a variety of health care stakeholders through its advisory panels, merit and peer-review processes, public comment periods, and stakeholder forums.

PATIENTS AND OTHER STAKEHOLDERS ARE INVOLVED IN...

Merit Review Panels

Research Teams

DistributeFindings toCommunity

Advisory Panelsand Workshops

Most Important Questions to Study

What to Fund Evaluationof Results

DisseminationWhat Questions and

Topics to Consider

Outreach Input

HELPING DETERMINE

INVOLVEDHOW?

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AMBASSADOR PROGRAM HISTORYOn October 27–28, 2012, PCORI invited 150 participants from across the country to a workshop entitled “Transforming Patient-Centered Research: Building Partnerships and Promising Models”. Three-quarters of the participants self-identified as patients, caregivers, or patient representatives; the remaining quarter represented other stakeholder groups, many of them researchers. Joe Selby, MD, MPH, the executive director of PCORI, remarked that the “readiness” of the patient and stakeholder community at the workshop “affirmed PCORI’s working assumption that the patient community is up to the challenge of playing its part in transforming the research enterprise.”

At the close of the workshop, a participant stood up and noted that PCORI had “ambassadors” in the room and that there was an opportunity to capitalize on the energy and enthusiasm of the group to be influential in promoting patient-centered research. One of the key recommendations that emerged from the workshop was the concept of a “PCORI Ambassador Program.” PCORI implemented this recommendation and deployed the program shortly thereafter.

In the Fall of 2018, the Ambassador Program underwent a significant redesign to be more closely aligned with PCORI’s institutional maturity and Ambassador needs. The redesign was initiated by PCORI’s Advisory Panel of Patient Engagement (PEAP) and overseen by a small subcommittee of advisory panel members. The Advisory Panel members recommended that the focus of the program shift toward evidence dissemination and community promotion given that a significant portion of PCORI-funded research studies was coming to fruition and could impact healthcare decision making on the ground.

The Ambassador Program now functions to support the mission and vision of PCORI while promoting PCORI’s research evidence and building the PCOR community across the nation.

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2

AMBASSADOR PROGRAM FRAMEWORKThe mission, vision, and strategic objectives are our guiding forces for the Ambassador Program framework.

To engage healthcare stakeholders in strengthening the patient-centered outcomes research (PCOR) community while increasing the reach and influence of PCORI-funded research.

PCORI Ambassadors are volunteers who have elected to “spread the word” about PCORI and PCOR throughout their networks. Ambassadors will advance PCORI’s organizational mission by engaging in research, knowledge sharing, and/or conducting outreach activities or trainings in their respective communities.

Strategic Objectives

Build and Promote PCOR Community by informing and empowering local communities or networks to engage with and promote PCOR research.

1Share and Translate Results through community-based efforts with a focus on PCORI-funded results and products.

3Engage with PCORI by acting as a diverse body of stakeholders for potential involvement in merit review, peer review, research and engagement awards, and more.

4Recruit and Retain PCORI Supporters by promoting funding opportunities, sharing PCORI’s story, and building Ambassador membership.

MISSION

VISION

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A QUICK SNAPSHOT OF CURRENT AMBASSADORS

Geographic Spread with PCORI Ambassadors (N=321)*

PCORI Ambassadors also live in Spain, Brazil, India, and Canada

PCORI Ambassadors livein 42 states, plus Washington, DC

Ambassadors by Stakeholder Community (N=321)*

62%Patient/

Caregiver

3%Industry

1%Policy Maker

3%Training

Institution

4%Hospital/Health

System

8%Clinician

19%Researcher

PCORI Advisory Panels (18%)

PCORI Merit Review

(25%)

PCORI Peer Review

(24%)

PCORI-Funded Projects (45%)

What PCORI Activities are Ambassadors Involved In?

*Note: Activities are not mutually exclusive. Data is representative of information captured in PCORI Ambassador Center as of April 2020. N=321

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AMBASSADOR PROGRAM OFFERINGSThe Ambassador Program offers a wide range of activities for members. If you would like to learn more, please visit our website or email PCORI staff at ambassadors@pcori.org.

Ambassador Center

The Ambassador Center is an online tool that creates a stronger network among the Ambassadors by providing information about Ambassadors’ organizational affiliations and roles, involvement with PCORI research and activities, and specific PCOR interests. It also enables Ambassadors to search for and connect with other Ambassadors based on their location, stakeholder type, conditions of interest, and more. The Ambassador Center allows the community to facilitate partnerships both within and outside the network for potential research partnerships, speaking engagements, and more. To access the Ambassador Center, visit the Who are PCORI’s Ambassadors? page on the PCORI website.

Ambassador Online Training

Online training equips Ambassadors with the necessary content expertise and skills to effectively communicate and share information surrounding PCORI, PCOR, the Ambassador Program, and stakeholder engagement. The training was updated in May 2020 to reflect institutional changes due to reauthorizing legislation.

The updated training is not mandatory, but PCORI staff highly recommend that Ambassadors, both new and old, complete the training. It will provide a refresher on knowledge about PCORI and will introduce the Ambassador Program. Upon training completion, you will be awarded an Ambassador certificate that can be used to demonstrate membership. Please download the certificate from our website here.

Please complete an interest form to take the new training and start your Ambassador journey. You can find the Interest Form on the Get Involved page on the PCORI website. If you are an existing Ambassador, you can request the new online training using this link.

Ambassador Mentorship Program

New Ambassadors have the optional opportunity to be paired with a longstanding Ambassador through the Ambassador Mentorship Program. The mentorship helps onboard new Ambassadors, welcome them into the community, and ultimately aims to promote development of skills needed to be actively involved in PCORI’s Ambassador Program.

Ambassador mentors will have opportunities to further develop leadership skills and learn about emerging trends from new Ambassadors. Ambassador mentees will gain a trusted advisor and will have enhanced involvement in the Ambassador Program. Both will form professional relationships and share their professional, research, and advocacy interests and connections. You can learn more about the mentorship program by reading this informational guide posted on the PCORI website.

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Online Yammer Community

Yammer is your PCORI Ambassador social media tool. It connects you to other Ambassadors, conversations, and information. Yammer is your virtual meeting place, so be sure to take time to set up an account, participate, and enjoy! PCORI staff will invite all new Ambassadors upon PCORI Online profile completion.

Ambassador Coffee Breaks

Coffee Breaks are 30-minute webinars that provide brief program updates and Ambassador spotlights. The series offers peer-learning opportunities and highlights new aspects of the Ambassador Program.

Find archived coffee break recordings on the Resources page on the PCORI website.

Ambassador Semi-Annual Newsletter

The PCORI Ambassador Program offers a semi-annual newsletter to bolster communication and create more opportunities for peer-to-peer learning among Ambassadors. The newsletter also provides important organizational updates, engagement opportunities, and recaps of any Ambassador programmatic events during the last quarter. The newsletter serves as a medium to effectively share this information.

The newsletter is an opportunity for Ambassadors to share engagement opportunities and important PCOR events as well. If there is anything that you would like highlighted in a newsletter, please contact the Ambassador Program team at ambassadors@pcori.org.

Ambassador Calls to Action

In addition to our semi-annual newsletters, we send bimonthly newsletters with calls to action to all Ambassadors, which are concrete ways to promote and share information about PCORI and PCOR to their networks. We might ask Ambassadors to share a new blog/editorial piece, peer-reviewed article, PCORI-developed product, or research result using social media, email, or other channels. We hope that these calls to action mobilize and inspire Ambassadors to continue sharing information about cutting edge PCOR research as well as PCORI updates. We will also provide a standing list of bonus calls to action in order to capture all the great activities that Ambassadors do on a regular basis. All of these activities can be shared with PCORI staff so that we can have a deeper sense of the program’s impact!

Please review each bimonthly newsletter for new calls to action and bonus activities.

Y

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JOIN THE AMBASSADOR PROGRAMThere are three easy steps to start your Ambassador journey. Please see the diagram below to get started and join the Ambassador Community.

STEP 2:Complete the PCORI Ambassador Training to learn more about

PCORI and your role as an Ambassador.

STEP 3:Join the Yammer Community and

start meeting other Ambassadors! PCORI

Staff will add you to our email listserv to receive newsletters, important

updates and events.

STEP 1:Sign up to become and Ambassador here and complete the interest

form. This will populate your profile in the

Ambassador Center.

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FREQUENTLY ASKED QUESTIONS (FAQS)Why Do We Need Ambassadors?There are many reasons why PCORI needs Ambassadors:

• Ambassadors have unique perspectives and ideas that support PCORI in its pursuit of helping patients and those who care for them make better-informed healthcare decisions.

• Ambassadors are PCORI’s boots on the ground and supplement our organizational efforts. They activate communities and help them engage in PCOR more effectively.

• Ambassadors prepare their communities to receive and provide feedback on research results.

• Ambassadors share PCOR best practices, enabling their communities to be more engaged in the preparation, conduct, and dissemination of research.

Are Ambassadors official PCORI representatives?No, PCORI Ambassadors are not members, representatives, or agents of PCORI and they do not speak on behalf of the institute, but rather are partners aligned with the mission of PCORI.

Can PCORI help Ambassadors advocate or lobby for PCORI?Ambassadors can lobby or participate in political activity on their own accord.

Why should I become a PCORI Ambassador? The PCORI Ambassador Program is a network of healthcare stakeholders interested in increasing the reach and influence of PCORI and PCOR and empowering patients to make informed healthcare decisions. View video

The program provides Ambassadors valuable professional opportunities, including (1) formalized training on PCOR, comparative clinical effectiveness research (CER), and stakeholder engagement in research; (2) networking within the PCOR community; (3) access to educational resources and PCOR-related materials; (4) peer learning; and (5) PCOR-related news to share with your networks.

What types of activities are PCORI Ambassadors involved with? View video PCORI Ambassadors can be involved in a variety of activities. While the community primarily functions virtually, Ambassadors are encouraged to connect and collaborate outside of PCORI-hosted platforms or events. Such activities include but are not limited to: (1) Sharing PCORI-funded research results; (2) building and promoting the PCOR community; (3) engaging with PCORI through involvement on research projects, advisory panels, and merit and peer review; and (4) recruiting and retaining PCORI supporters.

What is the time commitment? A minimum time commitment is not required. Ambassadors determine how much time they can commit to the program. If you cannot devote much time, we still encourage you to join to learn about PCORI and our research. Ambassador membership does not depend on level of involvement with the program since availability and commitment may change over time.

Is previous training required to be a PCORI Ambassador? Previous training is not required to join the program. We encourage individuals of all professional and educational backgrounds to become Ambassadors. PCORI offers a short virtual training to its Ambassadors who would like to learn more about PCORI and the Ambassador Program.

How do I become a PCORI Ambassador? To become a PCORI Ambassador, please fill out a program interest form, found here. By completing your Ambassador profile through the interest form, you will have officially joined the program.

Who can I contact to learn more about the PCORI Ambassador Program? Please email PCORI Ambassador Program staff at ambassadors@pcori.org.

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AMBASSADOR PROGRAM MEMBERSHIP GUIDELINESThe following section demonstrates how we intend to develop and preserve the credibility, sustainability, and integrity of the Ambassador program, reduce the risk of misunderstandings, and best achieve the mission and collective goals of the Ambassador Program.

What are the Roles and Expectations of an Ambassador?

• Build positive relationships with the healthcare community and work in partnership with other Ambassadors and healthcare professionals to promote research that incorporates the perspectives of patients and other stakeholders.

• Demonstrate and support the PCOR principles of trust, transparency, co-learning, reciprocal relationships, partnerships, and honesty.

• Remain informed of PCORI’s initiatives and promote our programs to stakeholder networks.

• Be active participants in a wider national network of PCOR.

• Help disseminate PCORI research findings, surveys, polls, and calls for input and information.

• Participate in PCOR training to enhance PCOR readiness for opportunities as patient and stakeholder partners in PCORI-funded research.

• Inform the PCORI Engagement Team of their activities and needs.

PCORI Ambassadors are volunteers, not members or representatives or agents of PCORI. They do not speak on behalf of PCORI but are partners aligned with the principles of PCORI. Statements made by Ambassadors should not be construed as statements with which PCORI necessarily agrees.

Check out our new online portal at pcori.org/ambassadors

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Check out our new online portal at pcori.org/ambassadors

GLOSSARYThe glossary provides working definitions of key concepts introduced in this document. Please refer to these terms throughout for clarification and direction.

Patient-Centered Outcomes Research (PCOR): Patient-Centered Outcomes Research (PCOR) helps people and their caregivers communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options.

Comparative Effectiveness Research (CER): CER compares the effectiveness of two or more interventions or approaches to health care, examining their risks and benefits. Comparing two or more interventions distinguishes CER from other types of clinical research. It can both validate a particular intervention and identify which treatments best meet a certain population’s needs.

Community: Any group of people that you identify as belonging to. Your community can be defined by geographic location or by a shared characteristic, interest, experience, identity, or goal. A community can also exist virtually or physically and in any sphere of your life. Examples of communities are faith-based organizations, colleagues, and condition-specific support groups.

Translation: Translation of medical evidence into practice, policy, and public health improvements refers to the widespread dissemination and adoption of interventions that can have a significant effect on health.

Dissemination: The intentional, active process of identifying target audiences and tailoring communication strategies to increase awareness and understanding of evidence and to motivate its use in policy, practice, and individual choices.

Evidence: The available body of facts or information that supports or counters a scientific theory or hypothesis. Examples of evidence that PCORI-funded projects produce are peer-reviewed scientific articles, PCORI’s lay and professional abstracts, and PCORI evidence updates.

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PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE

ACKNOWLEDGEMENTS We want to thank all PCORI Ambassadors for their commitment and support to PCORI to date. PCORI has grown exponentially in part through the hard work and support of Ambassadors—patients, caregivers, researchers, clinicians, and other stakeholders—building the capacity of the PCOR community. Ambassadors have been key for increasing PCORI’s reach by spreading the word about PCORI and its funded research portfolio to their own communities. Together, we can ensure that research culture shifts to be more patient centered, relevant, and valuable to all healthcare stakeholders.