Dear Ambassadors, Welcome to the Fall 2019 edition of the PCORI Ambassador Program Quarterly Newsletter! This newsletter edition provides updates on the PCORI Ambassador Program as well as PCORI-wide announcements and policy updates. We will also spotlight the Ambassador Workshop and 2019 PCORI Annual Meeting. This was indeed an exciting season for PCORI!

Moving forward, I hope that this newsletter can be a platform for Ambassadors to share their patient-centered outcomes research (PCOR) activities and potential partnership opportunities with others. You can share projects, initiatives, and other activities that you have been involved in and think would resonate with the broader community. I will also feature activities reported in the bimonthly Call to Action survey. Please share your ideas directly with Ambassador staff or through the Call to Action survey.

As always, your feedback on the newsletter is appreciated. If you would like to share any thoughts or comments, please email the Ambassador Program at ambassadors@pcori.org.    Krista Woodward

What's New

Ambassador Center Spotlight Through the Ambassador Center, we have been successful in connecting Ambassadors to each other and to external PCOR stakeholders. To date, we have received over 50 Ambassador Center requests! Ambassadors have been contacted for speaking opportunities, project collaboration, advisory panel membership, and more. Moving forward, we will feature one Ambassador Center request per newsletter that shows how this tool can be used to connect Ambassadors to important PCOR opportunities. Here is one example of an Ambassador Center request:

“Health Services Advisory Group, Inc (HSAG) was recruiting a diverse panel that includes African-American and Hispanic patients who are Medicare beneficiaries or other personal caregivers to participate in a Technical Expert Panel (TEP) to support the National Impact Assessment of the Centers for Medicare & Medicaid Services (CMS) Quality Measures Report. Patient/caregiver nominees will be expected to describe their experiences with health care to inform policy discussions and provide input on the development of the 2021 report. This foundational work influences policy to promote quality improvement in health care nationwide. Patient/caregiver representatives will participate in up to two workgroups to evaluate quality measures designated as key indicators of progress regarding CMS quality priorities. Would any PCORI Ambassadors be willing and able to serve as members on this TEP?” As a result of this request, Ambassadors Wenora Johnson and Sandy Finestone will now be members!  Ambassadors who have Ambassador Center profiles will have a higher chance of being selected for these types of activities. If you joined the Ambassador Program before October 26, 2018, and are not yet participating in the Ambassador Center, please complete this survey . All new Ambassadors will provide the necessary information for an Ambassador Center profile when they sign up for the program.

Ambassador Webinar Coffee Break Series We have had two Ambassador Coffee Breaks this Fall so far, and they truly reflect the diversity of the Ambassador community.  The September Coffee Break presented by Alyssa Lanzi was focused on the role of caregivers in research and how they can be more engaged throughout the research process and care continuum. Our most recent October Coffee Break was presented by Janice Tufte and was focused on patient engagement within measure and guideline development, refinement, and dissemination.

If you would like to host a Coffee Break, please contact the Ambassador Program at ambassadors@pcori.org . Archived recordings of previous Coffee Break webinars can be found on Yammer and are archived on the PCORI website here .

Staffing Transitions Meghan Berman has transitioned into a new role within the Public and Patient Engagement Team at PCORI. Meghan will be involved in a multitude of projects, but notably, she will be supporting all five PCORI advisory panels, starting from panel member recruitment all the way to final slate selection. She will also coordinate trainings through the Alan Alda Center for Communicating Science, which provides technical assistance and support for PCORI-funded researchers and partners in their dissemination and engagement efforts. We are thrilled that Meghan is continuing to grow professionally but will miss her involvement with the Ambassador Program. If you have any questions related to the Ambassador Program, please contact Krista Woodward ( kwoodward@pcori.org) or the Ambassador Program ( ambassadors@pcori.org).

PCORI 2019 Annual Meeting

Making a Difference This year’s theme, Making a Difference: Using Patient-Centered Research Results in the Real World, showcased findings from many PCORI-funded projects that are now finding their way into policy, improving decision making, and changing practice. The Annual Meeting displayed PCORI’s $2.4 billion portfolio of more than 700 research and related projects advancing patient-centered outcomes research. More than 200 of those studies have been completed, generating dozens of summaries of peer-reviewed results reported on our website and scores of reports in leading medical journals. The Annual Meeting allows PCORI-funded project teams, healthcare stakeholders, and patient advocates to come together to learn and engage with this new burgeoning evidence base.  We heard at the Annual Meeting that our funded projects are addressing some of the fundamental challenges facing patients, their families, and the healthcare system. These include such critical issues as knowing which treatments advised by a patient’s doctor have evidence proving their effectiveness and safety. This is the crux of our organizational mission. We fund projects that help people make informed healthcare decisions by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community. Especially interesting this year were dialogues about the exciting initial results of our ongoing efforts to document the impact of engagement on how the studies we fund are designed and conducted to ensure that they answer questions important to patients and produce results that are relevant and useful in daily practice.  If you couldn’t join us for this year’s meeting, or were at the meeting but want to catch up on sessions you might have missed, you can see the video archive of our sessions here.

Ambassador Workshop 2019 Earlier this year we conducted an interactive workshop focused on storytelling that would support Ambassadors in their pursuit of shifting research culture to be more patient centered. Storytelling within health care and research has the power to enhance not only how we care for patients and families, but how we frame our research questions, policies, and dissemination efforts at a larger scale.  The workshop helped Ambassadors craft their own story and think more about how they can weave it into a larger PCOR narrative. By sharing how each Ambassador’s story intersects with the greater value of PCOR, research engagement, and patient-centeredness, Ambassadors will be able to impact how health research is planned, conducted, and disseminated to broad, diverse communities.  We learned how others are currently using storytelling to improve health research by leveraging their experiences as a patient, caregiver, researcher, and advocate. We heard from multiple Ambassadors including Bill Adams, Mathew Hudson, Bobbie Reed, and Kimberly Richardson who showed the breadth and depth of Ambassadors’ personal and professional stories. We also welcomed researcher Kathleen McTigue, who was able to share how her team at the University of Pittsburgh has been collecting stories from patients, caregivers, and others who are facing a health problem or accessing the health system. By collecting hundreds of stories, the research team will be able to analyze them to better understand the needs of patients and others and recommend policy and practice changes.  Lastly, Chris Wilson from the National Patient Advocate Foundation (NPAF) facilitated a lively interactive session focused on why stories matter when discussing medicine, science, and data. We thought of new ways of telling stories and contextualizing them in overarching health care and research contexts or experiences.  You can view the archived workshop webinar, which includes a recording of all panel presentations and the facilitated session. We have also posted the workshop workbook, which includes workshop information as well as take home exercises that can be adapted to use storytelling techniques in your communities.

Policy Update

In September, PCORI was included in the short-term funding legislation that passed Congress and was signed by the president. That legislation provides funding until November 21. As such, work continues to secure longer-term PCORI reauthorization. Earlier this month, on October 18, a bipartisan group of senators released a discussion draft of legislation to provide a 10-year reauthorization. The draft also includes certain policy provisions, including language that would allow PCORI to consider certain economic cost data, creation of an expert advisory panel, and provision of Medicare coverage for PCORI-funded studies. The draft legislation was prepared by Sens. Shelley Moore Capito (R-WV), Bill Cassidy (R-LA), Mark Warner (D-VA), and Chris Van Hollen (D-MD) following consultation with a number of stakeholder groups. We anticipate that PCORI reauthorization is most likely to occur through inclusion in a broader spending package rather than through freestanding legislation. It is unclear what Congress’ next steps and timing will be, but we remain confident that Congress will ultimately reauthorize PCORI.

PCORI Updates

Engagement Tool and Resource Repository PCORI supports the uptake of engagement practices and methodologies within the broader healthcare research community. To encourage the spread of these practices, we have assembled a repository of engagement-related tools and resources developed and used by PCORI awardees. This searchable peer-to-peer repository includes resources that can inform future work in PCOR and was developed based on a process which you can learn more about here.  Explore the Repository

Urinary Incontinence Evidence Update Millions of women experience urinary incontinence. However, many women don’t seek treatment because they don’t realize that improvement is possible. A recent review of research found that several nonsurgical treatments for urinary incontinence can help. PCORI has developed informational resources for women and clinicians. View the Evidence Update

Get Involved

New Funding Opportunities The Eugene Washington Engagement Awards Program recently announced two new funding opportunities and is accepting applications until November 15, 2019.  Engagement Award: Accelerating the Adoption of Tools and Resources provides support for projects that give organizations and community groups the opportunity to scale up or adopt meaningful engagement tools and processes with more communities, stakeholders and patients with the intent to further build capacity/skills for PCOR and clinical comparative effectiveness research (CER). Engagement Award: Community Convening Around Patient-Centered Outcomes Research (PCOR) provides funding to organizations and community groups to hold multistakeholder convenings that include patients, researchers, clinicians, purchasers, payers, health system leaders, and other stakeholders. These convenings will have a focus on, and commitment to, supporting collaboration around PCOR and CER.  A comprehensive list of all open and upcoming funding opportunities can be found on PCORI’s website .

Meet the Team

Krista Woodward, MPH, MSW, is a senior program associate at PCORI and manages the Ambassador Program while also supporting stakeholder engagement, PCORI Merit Review, and tool and technical assistance development supporting the science of engagement in research.

Stay in Touch

What else would you like to see in this newsletter? If you have input on content or would like to contribute to next quarter’s newsletter, please contact Krista Woodward before January 15, 2020 at ambassadors@pcori.org .  If you wish to change the email address we use to send this newsletter, please contact us at ambassadors@pcori.org .