December 20, 2018

Dear Ambassadors, Welcome to the fall edition of the PCORI Ambassador Program Quarterly Newsletter! We are excited to use this edition of the newsletter to share the recent updates regarding the redesign of the PCORI Ambassador Program. This newsletter also includes PCORI-wide announcements, policy updates, and a recap of recent PCORI meetings, including the Annual Meeting.

We would like to introduce the new “Call to Action” feature of Ambassador program newsletters in this edition. Whenever you see this megaphone graphic, please note that the following text is a “Call to Action” and we encourage you to respond to the request. We hope that these “Calls to Action” will inspire new ways for Ambassadors to engage and raise awareness in their communities surrounding PCOR and research evidence.

As always, your feedback on the newsletter is appreciated. If you would like to share any thoughts or comments, please send them to the Ambassador program team at ambassadors@pcori.org.   Happy holidays and see you in 2019!   The Ambassador Program Team (Krista Woodward & Meghan Berman)

What's New

Ambassador Webinar Coffee Break Series Coffee Breaks are a monthly series of 20-minute webinars that provide brief program updates or Ambassador spotlights. The series aims to offer peer learning opportunities and to highlight new aspects of the Ambassador program. To date, there have been six Coffee Break webinars, hosted by the following Ambassadors: PCORI Staff: PCORI staff shared programmatic updates and upcoming activities related to the Ambassador program. Libby Hoy: Libby Hoy shared her journey as an Ambassador and how this role is connected to her work with Quality Improvement Organizations within the Quality Innovation Network (QIN-QIOs) partnership. Brendaly Rodriguez: Brendaly Rodríguez shared her work with the University of Miami and Florida Community Health Worker Coalition, as well as her roles as an Ambassador and PCORI advisory panel member. Regina Greer-Smith: Regina Greer-Smith shared her work on the S.T.A.R. Initiative, which leverages technology to better engage minority communities in research, as well as her role as an Ambassador. Mat Edick: Mat Edick shared how his personal and professional experiences have shaped his interests in patient engagement in research focused on improving access to care and outcomes for individuals with rare genetic disorders. Cherie Binns: Cherie Binns, Hollie Schmidt, Shawn Feliciano, and Anita Williams, presented on their work with the Multiple Sclerosis Patient-Powered Research Network (PPRN), iConquerMS. Through an Engagement Award, iConquerMS has been studying ethnic representation in multiple sclerosis research.

If you would like to host a Coffee Break, please contact the Ambassador program team at ambassadors@pcori.org . We are always looking for new topics, ideas, and hosts for Coffee Breaks! Archived recordings of previous Coffee Break webinars can be found on Yammer and are archived on the PCORI website .

Updates to the PCORI Website The redesigned Ambassador program section of the PCORI website is now live! The updates reflect changes to the program, such as the updated mission, vision, and objectives; focused directives for involvement; role clarification; and a resource directory. It also includes the new Ambassador Center, which is further detailed in the following section of the newsletter. Check out a snapshot of a new page below!  We hope that these new and improved web pages provide the details necessary to become an activated Ambassador within your community. If you still have any lingering questions, please email the Ambassador team at ambassadors@pcori.org .

The Ambassador Center The Ambassador Center is publicly available on PCORI’s website! This networking tool connects users to Ambassadors through a targeted search function. It also allows users to find Ambassadors based on attributes such as state, stakeholder type, research experience, and subject matter expertise. Users of this tool can even search for Ambassadors by name and affiliated organization. If you are interested in reaching out to an Ambassador, submit a request through the tool and PCORI staff will send the request on to the specific Ambassador. This approach allows you to communicate with Ambassadors without making their contact information publicly available. The Ambassador profiles provide a detailed biographical statement about their professional and personal endeavors related to patient-centered outcomes research (PCOR). This tool has already helped connect Ambassadors to each other and to external PCOR stakeholders. Ambassadors have utilized it as a way to get back in touch after the Annual Meeting, and for outreach in developing condition-specific affinity groups. Check out a few snapshots of the new tool below — including one of the new profile pages!

There are still 250+ Ambassadors who are not included in the Ambassador Center. Please complete the survey if you would like to be featured! If you joined the Ambassador program before October 26, 2018, and have not yet updated your information for the Ambassador Center, please complete this survey .

Ambassador Program Training Update PCORI is excited to announce its redesigned Ambassador program training! The updates aim to better prepare individuals for their new role as PCORI Ambassadors by detailing program components and explaining how the Ambassador program supports PCORI’s broader vision and mission. The training ensures that new Ambassadors have content expertise as well as actionable ideas to effectively communicate and disseminate relevant and accurate information about PCORI and its funded research. In response to Ambassador feedback, the updated training no longer has a mandatory final exam. Rather, new Ambassadors will be prompted to answer a series of “Knowledge Checks” after each module with learning opportunities sprinkled throughout the training. We implemented these changes because we want the Ambassador program to be as inclusive as possible. Ambassadors who have taken the old training and would like to take the new training can access it by logging in to the system using this link . Ambassadors should use the email address and password that they used for the old training. Register for the “PCORI Ambassador Program Training” by selecting the button to the right of the training title labeled “Register.” After registering, the option to “Start” the training will be presented to the user. We are encouraging seasoned Ambassadors to complete the new training to ensure all Ambassadors are aware of programmatic changes and expectations. New Ambassadors should have received an email with training information when they completed the Interest Form. Your feedback on the training updates is welcomed and appreciated. We will continue incorporating updates into the training each quarter for the next year. If you would like to share any thoughts or comments about the content, organization, or functionalities, please send them to the Ambassador program team at ambassadors@pcori.org .

Policy Update

Following the midterm elections , and with a handful of races still undecided, Democrats have won enough seats to take control of the House of Representatives while Republicans have added to their Senate majority. Throughout the election, health care was among several priority topics for voters. And with the new House Democratic majority, many lawmakers will focus their efforts on stopping Republican or Trump Administration attempts to roll back the Affordable Care Act or overhaul Medicare and Medicaid. Moving into next year, the House Democrats may try to work with the Senate on legislative efforts to stabilize the ACA insurance markets and may seek potential compromises or solutions to address the rising costs of prescription drugs.   A Democrat-controlled House does improve PCORI’s chances of reauthorization. We have strong relationships with Democratic leadership offices and it is important that we continue to build on them throughout the year. While having a Democratic House does help, it is important to remember that Republicans still control the Senate and any legislation will need bipartisan support in order to be passed by Congress.   There are a handful of Senators from both parties who have expressed strong interest in leading PCORI’s reauthorization efforts. Staff from the offices of Sen. Mark Warner (D-VA) and Sen. Bill Cassidy (R-LA) spoke at a Congressional breakout session during our annual meeting and their comments resulted in very positive coverage about PCORI’s reauthorization (CQ* and Medpage Today ). Once leadership and committee assignments are set in the House, we will have a much better sense of how best to approach our House champions and engage with them as they develop their positions/strategies to advance PCORI reauthorization. As with the Senate, we hope and expect that PCORI’s reauthorization effort will be bipartisan. We have identified potential Democratic leads in the House, but we will continue our efforts to identify Republican champions as well to ensure PCORI’s support is bipartisan.  * To access the CQ article, please contact Meghan Berman at mberman@pcori.org .

PCORI Updates

2018 PCORI Annual Meeting From Evidence to Impact: Putting What Works into Action Last month, PCORI concluded its fourth Annual Meeting, gathering nearly 1,000 patients, caregivers, researchers, clinicians, and other healthcare stakeholders. Amy Berman, delivered an exceptional opening keynote speech, followed by poster sessions and the plenary session “ How Much, How Often? What to Do When One Treatment Approach Isn't Better Than Another.” On Thursday, meeting attendees had the opportunity to choose between several stimulating breakout sessions, and we heard from two former US Representatives, Phillip Gingrey and Tony Coelho, on the creation, evolution, and impact of PCORI. Mark Smith delivered a powerful closing keynote speech “ Patients! Engagement, Empowerment, and the Curse of Better Measures” on Friday, followed by a plenary session and workshops and symposia. All keynotes, plenaries, and breakouts were webcast and have been archived on our website for you to view at your convenience.

2018 PCORI Annual Meeting Ambassador Workshop In line with the Annual Meeting’s theme, PCORI staff led a preconference workshop for Ambassadors, focused on developing strategies to effectively prepare their communities to receive and engage with PCORI-funded research results. The overarching theme for the workshop was that Ambassadors are community connectors who bridge their communities to PCOR and PCORI. The workshop opened with an Ambassador-led panel discussion spotlighting panelists’ work engaging their communities in research. It then transitioned into a series of interactive breakout sessions that focused on how to best leverage PCORI-funded research results to effectively share in all types of communities. Ambassadors shared their communities’ motivations for uptake of evidence in group discussions and brainstormed new strategies for dissemination. Ambassador panelists included Matthias Cheung, Beverly Rogers, Thomas Scheid, Alexis Snyder, and Robert Stevens. Breakout sessions were led by Krista Woodward, Chinenye Anyanwu, Meghan Berman, and Denese Neu.  A recording of the workshop has been archived here for you to view at your convenience. You can access the recording using the password Ambassadors2018. You can also request an electronic version of the Ambassador Workshop Workbook by emailing ambassadors@pcori.org .

Advisory Panel Meeting Recaps View a recap and the archived webinar for past Advisory Panel meetings here.

Upcoming Funding Opportunities PCORI recently posted three funding preannouncements to give prospective research teams time to consider applications. One preannouncement is on psychological and pharmacological treatments for posttraumatic stress disorder in adults, another is on treatments for age-related hearing loss, and the third is for the treatment of anxiety among children, adolescents, and young adults. The deadline for submitting Letters of Intent for all three is Thursday, January 31. A comprehensive list of upcoming funding opportunities can be found on PCORI’s website .

Open Funding Opportunities PCORI’ s Board of Governors approved $54 million to fund 12 new studies on smoking cessation, improving mental health, and a range of other conditions that impose high burdens on patients, caregivers, and the healthcare system. A comprehensive list of open funding opportunities can be found on PCORI’s website . Full proposals are due starting in mid-January.

Please share these upcoming funding opportunities with your network on social media or other channels!

Meet the Team

Krista Woodward, MPH, MSW, is a Senior Program Associate at PCORI and manages the Ambassador program while also supporting research portfolio management and evaluation efforts.

Meghan Berman, MPH, is a Program Assistant at PCORI. She helps support the Ambassador program and manages the advisory panel process from outreach to review of applicants to onboarding.