January 11, 2018
NIAMS Coalition Outreach and Education Meeting group
Attendees at the NIAMS Coalition 2017 Outreach and Education Day.

Executive Summary

Welcome and Announcements

The sixth National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) biennial Coalition Outreach and Education Meeting: Creating Connections for Science, was held on October 17, 2017, at the Natcher Conference Center on the National Institutes of Health (NIH) Campus in Bethesda, Md. The NIAMS Coalition is an independent consortium of more than 90 professional and voluntary organizations interested in the mission and research areas of the NIAMS. More than 55 representatives from 38 different Coalition organizations attended the meeting.

Director of the NIAMS Office of Science Policy, Planning and Communications, Anita M. Linde, M.P.P., welcomed attendees, emphasizing the value the NIAMS places on the relationship with the Coalition. She highlighted the importance of these meetings as a platform for Coalition members to network, share best practices and strategize ways to connect science to the public, while learning more about the NIH and NIAMS.

Next, Ms. Linde provided an overview of the day’s agenda, highlighting opportunities for participants to create connections, foster collaboration and share ideas through poster sessions — new at this year’s meeting — and conversations on social media platforms. Finally, Ms. Linde introduced the members of the NIAMS executive leadership team in attendance and thanked everyone who contributed to the planning of this year’s meeting.

Coalition Overview

Coalition Co-chair Robert Riggs, CEO of the Scleroderma Foundation, thanked everyone for their time and dedication to the NIAMS Coalition and this year’s meeting. He encouraged participants to take advantage of the day’s in-person engagement opportunities to build connections that go beyond email and phone. After a review of Coalition history, Mr. Riggs described some of the Coalition’s primary activities: teleconferences and webinars, patient visits to the NIH campus and Congressional events, which Coalition members may organize to educate key stakeholders about the diseases and research progress made possible through investment in the NIAMS and NIH.

The State of the Institute

NIAMS Director Stephen I. Katz, M.D., Ph.D., presented a certificate of appreciation to Mr. Riggs, recognizing his thoughtful and outstanding leadership as a Coalition co-chair over the past two years. Dr. Katz thanked Mr. Riggs and other Coalition members who participated in the meeting planning committee, including Co-chair Stephanie Hazlett of the American Association of Orthopaedic Surgeons, and Anna Hyde and Vincent Pacileo from the
Arthritis Foundation,  for their work in shaping the day’s program.

Dr. Katz’s State of the Institute address focused on three areas: the ways Coalition organizations and the NIAMS work together to raise awareness about the diseases we study, ongoing research activities, and a look to the future. He highlighted examples of collaborative activities since the 2015 Coalition Outreach and Education Meeting, such as Congressional briefings and courtesy visits, events for patients and families, and Congressional tours. He called participants’ attention to the passage of the 21st Century Cures Act in late 2016 and expressed gratitude for the dedicated efforts of lawmakers and stakeholder groups. Dr. Katz introduced one of the morning’s breakout sessions, “Best Practices in Social Media,” noting the evolution in information sharing to social media, Twitter and Facebook chats, webinars, YouTube videos, radio shows and videocast NIAMS Advisory Council Meetings. He reminded attendees that they can tune in to a NIAMS Council meeting in real time—or watch it later as an archived event.

Dr. Katz stressed the importance of hearing the perspectives of Coalition members throughout NIAMS’ decision-making processes. He stated appreciation for every voice, be it through Requests for Information, roundtable discussions on emerging research topics, or service on review committees or the NIAMS Advisory Council and its working groups. Dr. Katz mentioned that six of the 18 NIAMS Advisory Council members are patient or public representatives. He pointed out that public input also informs changes to NIH websites, such as the redesigned NIAMS website and the updated ClinicalTrials.gov.

Dr. Katz noted several collaborative research endeavors where the NIAMS is partnering with Coalition organizations and other private entities, such as the Accelerating Medicines Partnership (AMP) and the Foundation for NIH Biomarkers Consortium. He noted that the NIAMS is planning a workshop, in partnership with the National Institute on Aging, the NIH Office of Disease Prevention and other parts of the NIH, through the Pathways to Prevention (P2P) Program to study the use of drugs for osteoporotic fracture prevention.

Dr. Katz also called attention to an article he wrote about priority setting at the Institute, “Commentary: Setting priorities for research funding at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).” He stressed the NIAMS’ commitment to early stage investigators and support for the Next Generation Researchers Initiative.

He concluded his remarks stating, “everything that NIH does belongs to you as patients, researchers, health care providers and members of the American public.”

Success in Partnerships – How Can Coalition Organizations Advance the Research Enterprise?

NIAMS Deputy Director Robert H. Carter, M.D., served as moderator for a panel discussion exploring how Coalition organizations are creating successful partnerships to advance the research enterprise. The panel participants were Suzanne Schrandt, J.D., of the Arthritis Foundation; Michael Siegel, Ph.D., of the National Psoriasis Foundation (NPF) and Tracy Hart, of the Osteogenesis Imperfecta Foundation (OIF). Dr. Carter emphasized the importance of partnerships and the ways the NIAMS collaborates with the Coalition on activities that serve key constituents. Ms. Schrandt described an Arthritis Foundation program, called PREP (Preparing for Roles as Expert Patients), in which patients take courses to develop skills to become more effective in a variety of roles, including serving as research advisors and as members of clinical guideline development teams. Dr. Siegel discussed programs that NPF has developed to support research and new investigators. The NPF’s Bridge Grants program funds researchers who submitted worthy but unfunded K- and R- applications to the NIH. The awards provide a year of support enabling researchers to collect additional data and strengthen their future NIH application. Ms. Hart talked about the importance of training and education for physicians and patients. She discussed the critical role patient advocacy organizations play in connecting researchers and individuals with rare diseases. Finally, she highlighted the OIF’s role in the Brittle Bone Diseases Consortium, a part of Rare Diseases Clinical Research Network (RDCRN), an initiative of NIH’s Office of Rare Diseases Research.

Breakout Session—Best Practices in Social Media Outreach

Elizabeth Fassbender, of the American Academy of Orthopaedic Surgeons, and Stephanie Hlywak, M.A., of the Muscular Dystrophy Association, led a breakout session filled with tips on leveraging social media platforms. Ms. Fassbender noted that a recent survey showed 67 percent of Americans get at least some of their news via social media. These platforms, including Facebook and Twitter, have transformed from connecting with friends and family to being places offering news and information. She said when using social media, organizations should first determine what they hope to accomplish and who their target audience is. Ms. Hlywak stressed that social media should be just one part of your overall digital strategy. Blogs, email and search engine optimization remain pieces that should be used as appropriate. She noted that her organization’s social media efforts are always aimed at driving traffic back to their website, as opposed to news sites or other websites.

Breakout Session—FDA Patient-Focused Drug Development Workshop Process

The breakout session “Voluntary Organizations and the FDA Patient-Focused Drug Development Workshop (PFDD) Process” was presented by Kathleen Arntsen, of the Lupus and Allied Diseases Association, Inc.; Diane Gross, M.P.H., of the Lupus Research Alliance and Patrick Wildman of the Lupus Foundation of America. The speakers provided insights from the externally-led Lupus PFDD meeting the three organizations collaborated on and brought to fruition in September 2017. The speakers all stressed the extensive collaborative work that went into preparing for the lupus meeting, such as conducting a survey to gather input from a diverse group of people with lupus on what matters most to them. This patient perspective informed the public meeting agenda, which focused on disease burden and treatment approaches. The planning process also reflected lessons learned from earlier PFDD events sponsored by other organizations. A final “Voice of the Patient” report to the FDA is in progress and will reflect the broad input from the lupus community and organizations. The speakers underscored the value of reaching out to participants in the community and working closely with the FDA when planning a PFDD meeting.

Patient Engagement and Partnerships in the All of Us Research Program

Eric Dishman, director of the NIH All of Us Research Program, provided an update on the nation-wide precision medicine effort. With a goal of one million participants when the program is fully underway, the project is currently in a beta phase. All of Us aims to make precision medicine accessible to more people, regardless of wealth or social status. Researchers will gather biospecimens (blood and urine) and electronic medical records to begin to understand how external influences, such as lifestyle habits and environmental factors, may impact health. As the program begins, organizers are learning how to create relationships with participants, and enable engagement for decades. A major goal of the All of Us Program is to ensure the research cohort includes every racial and ethnic group and all parts of the country. Mr. Dishman discussed how during the initial beta phase, All of Us is partnered with 50 research sites and has successfully enrolled more than 3,000 participants. Much of the future recruitment will come through healthcare provider organizations or through a direct volunteer program. Based on lessons learned from the beta phase, All of Us plans to launch an expanded beta before the full roll out of the program, anticipated in early 2018. Mr. Dishman stated the program is aiming to develop the most useful data set possible to facilitate future research activities. They plan to meet regularly with the research community to discuss the types of data and biospecimens that could be efficiently collected and make the resource more useful to a wider array of research questions.

Breakout Session—Tools and Concepts in Chronic Disease Management

In the breakout session,Tools and Concepts in Chronic Disease Management,” Cindy McDaniel, M.B.A., of the Arthritis Foundation, discussed her organization’s work to determine what people with arthritis and chronic diseases need and want, and how advocacy groups can help meet these needs. Key issues among those with arthritis include both physical and emotion pain, access to care, the ability to live independently and personal connections—interacting with others “like me.” Blake McDonald and Larry Green, M.D., of the American Academy of Dermatology, presented the health care providers’ perspective on helping patients with chronic disease. They discussed several educational resources developed for their members regarding chronic disease management, and noted the various formats, including in-person at scientific meetings, online and via mobile apps.

Breakout Session—NIH Implementation of the 21st Century Cures Act

Patricia Brandt Hansberger, senior legislative analyst, Office of Legislative Policy and Analysis, NIH, and Dane Christiansen, of the Health and Medicine Council of Washington, discussed NIH implementation of the 21st Century Cures Act. Ms. Hansberger said while the Act affects a number of Federal agencies, there are approximately 50 provisions that either have direct impact on NIH or touch the agency in some way. The Cancer Moonshot, the Precision Medicine Initiative (All of Us) and the BRAIN Initiative are among the ongoing NIH efforts authorized by the law. In addition, attention is focused on future NIH grantees through the Next Generation Researchers Initiative, which is targeted towards early- and mid-career investigators. Mr. Christiansen discussed the law’s goal to bridge the “Valley of Death,” a term used to describe the gap between laboratory discoveries and clinical practice. He noted that members of Congress felt discoveries were too slow to reach patients, and therefore the law seeks to speed up the approval process at the U.S. Food and Drug Administration. Other goals include improved patient engagement during the drug development process and speedier access to treatments for rare or pediatric conditions.

A Vision for Minority Health and Health Disparities Research

Eliseo Pérez-Stable, M.D., director of the National Institute on Minority Health and Health Disparities (NIMHD) outlined the history of the NIMHD and discussed mechanisms that lead to health disparities. These include biological processes and genetics; the physical and cultural environment; clinical events and health care; and individual behaviors, lifestyle, beliefs and response to chronic stress. He emphasized the importance of diversity when recruiting participants in clinical studies, as well as in developing clinical and biomedical scientific workforces. He cited the NIMHD Language Access Portal as a resource to help improve access to cross-cultural and linguistically appropriate health information.

Concluding Remarks

Coalition Co-chair Stephanie Hazlett closed the meeting by thanking the speakers, poster presenters, NIAMS staff and outgoing co-chair, Robert Riggs. She encouraged attendees to “continue the conversation” stating “I hope you leave here with new connections, new program ideas or at least some extra invigoration.” She asked Coalition members to be on the lookout for an upcoming announcement on the incoming co-chair, and future opportunities to engage with the Coalition.

Ms. Linde thanked the participants for attending, and for their enthusiasm and engagement. “I especially appreciated the great energy in the room as new relationships were being forged and connections were strengthened.” She encouraged everyone to complete the meeting evaluation form, and to stay connected with the Institute throughout the year by visiting our redesigned NIAMS website, subscribing to our newsletters and following and engaging with NIAMS on our social media channels.

Last Reviewed: