December 10, 2015
Attendees at the NIAMS Coalition 2015 Outreach and Education Day.
Credit Attendees at the NIAMS Coalition 2015 Outreach and Education Day.

Executive Summary

Welcome and Announcements

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) biennial Coalition Outreach and Education Meeting: Creating Connections for Science, was held on October 27, 2015, at the Fishers Lane Conference Facility in Rockville, Md. The NIAMS Coalition is an independent group of more than 90 professional and voluntary organizations interested in programs that are under the purview of the NIAMS. More than 50 representatives from 42 different Coalition organizations attended the meeting. Participants were able to expand their knowledge of the programs and opportunities available through the National Institutes of Health (NIH) and the NIAMS, interact with staff and each other, and share ideas about how to best collaborate with the Institute and one another.

Anita M. Linde, M.P.P., Director of the NIAMS Office of Science Policy, Planning and Communications, welcomed participants, noting that this was the largest gathering of Coalition organizations since NIAMS began hosting Outreach and Education Meetings for the Coalition eight years ago. She credited this to "the incredible work of the Steering Committee and a testament to the value of these interactions." Ms. Linde described three common pillars that the NIAMS/NIH shares with the Coalition — a strong sense of purpose, a commitment to partnerships, and service to patients.

Getting to Know the Coalition

Coalition Co-chairs Leah Howard, J.D., of the National Psoriasis Foundation, and Mary Wheatley, IOM, CAE, of the Rheumatology Research Foundation, set the tone for the day by emphasizing the valuable partnership between the Coalition and the NIAMS. They provided an overview of the Coalition’s structure and history, and described some of the Coalition’s activities that support the NIAMS, such as teleconferences, patient visits and Congressional events. Ms. Howard and Ms. Wheatley encouraged Coalition members to engage with one another and share information through the NIAMS Coalition LinkedIn page, and to tweet throughout the day using the hashtag #NIAMSCoalition.

The State of the Institute

NIAMS Director Stephen I. Katz, M.D., Ph.D., presented a certificate of appreciation to Ms. Howard, recognizing her outstanding leadership as a Coalition Co-chair over the past two years. He also welcomed the incoming Co-chair, Mr. Robert Riggs, president of the Scleroderma Foundation.

Dr. Katz described the three components of NIAMS’ mission: research, training, and information dissemination. He stated that while there is overlap in the diseases studied across the NIH institutes, there is no duplication or redundancy, because each institute conducts research on different aspects of the diseases, thereby fostering collaboration and assuring that good research doesn’t "fall through the cracks." He then highlighted the Accelerating Medicines Partnership, the Brittle Bone Disorders Consortium, and the Vasculitis Clinical Research Consortium as key examples of the benefits of public-private collaborations. Dr. Katz noted the major advances made in rare disease research, emphasizing its importance in providing greater insight into mechanisms and treatments for common diseases. Dr. Katz reiterated the necessity of NIAMS’ and NIH’s investment in basic research as the foundation for the discovery of future treatments, citing NIAMS Scientific Director Dr. John O’Shea’s role in discovering the signaling pathway that eventually paved the way for a new treatment for rheumatoid arthritis. In addition to funding outstanding investigator-initiated research, the NIAMS invests in the future by supporting early-career stage researchers through programs such as the Supplements to Advance Research Award. Dr. Katz also emphasized that "every voice counts" and that the NIAMS listens to many stakeholders when making decisions. Dr. Katz concluded his presentation by identifying the challenges and opportunities the Institute faces. The NIAMS is unable to support all meritorious research, but through setting clear priorities and partnering with NIAMS Coalition organizations, the Institute can continue to advance biomedical research.

Making Medical Research Relevant for Nonscientists

Mary Woolley, President of Research!America, noted that since she began her career in 1972, the NIH has grown from 15 to 27 Institutes and Centers, and from a $10 billion to a $30 billion budget. Research!America’s goal is to increase awareness of the health and economic benefits of medical research and build a strong base of citizen support for more research and innovation. "Research and researchers must not become invisible," Ms. Woolley stated, urging the group to "constantly keep up the drumbeat on the importance of research." She described Research!America’s 2015 National Health Research Forum and the 21st Century Cures as examples of pivotal opportunities to increase the momentum of research discovery. She also emphasized the importance of including patients as equal partners in the research conversation.

Ms. Woolley presented data from Research!America’s public opinion polls on the importance of science in public policy. There continues to be public confusion about science. Ms. Woolley emphasized the need to teach people that science is a non-linear, dynamic process, and cautioned that failing to engage the public can result in a downward spiral of public understanding about research. Abraham Lincoln once said, "Public sentiment is everything. With public sentiment, nothing can fail. Without it, nothing can succeed." This is an apt reminder that the public’s support for research is crucial. The polls indicate that people are interested in science, and want their political candidates to have a basic understanding about science. They also want public policy to be based on science, and are willing to share their health information to improve patient care and advance medical research. Unfortunately, most people cannot name a living scientist, and a majority of Americans do not know of entities that conduct research. On a positive note, recognition of the NIH has increased in the last few years. Ms. Woolley concluded her presentation by encouraging all Coalition organizations to unite with a common voice and message, suggesting the use of "aspirational communication" (Then — Now — Imagine) as a framework for creating simple, yet inspiring messages.

Putting His and Hers Science to Work for Women’s Health

Janine Clayton, M.D., Director of the NIH Office of Research on Women’s Health (ORWH), opened her presentation by emphasizing that "sex has a place of primacy throughout the entire NIH mission." Dr. Clayton distinguished between the terms "sex" and "gender," stating that sex is a biological variable, whereas gender is a social construct. She explained that taking a deliberate approach in considering sex in preclinical research will help to ensure that both women and men get the full benefit of medical research. The goal is to enhance scientific rigor and transparency by ensuring that sex variables are considered as investigators develop their research questions, design experiments, analyze data, and report results. This, she emphasized, is an essential step toward personalized medicine. Dr. Clayton described many NIAMS-ORWH collaborations, including the Lupus Federal Working Group, the Pediatric Patient Reported Outcomes in Chronic Diseases Consortium, and the Osteoarthritis Initiative, which she declared a model of federal investment, citing the robust enrollment of women in the study. She referred people to for more information.

Breakout Session—Leveraging Resources to Improve Research Opportunities

In the breakout session titled, Leveraging Resources to Improve Research Opportunities, Alex Silver, M.B.A, of the EB Research Partnership, provided an introduction to the concept of venture philanthropy and how his organization has implemented this strategy to ensure that the non-profit entities that fund the research also benefit from the commercialization of those products, and recoup their investments. EB, or epidermolysis bullosa, is a group of blistering skin conditions that can be painful and lead to serious complications. Mr. Silver discussed how his organization insisted on being a partner in the benefit, as well as the risk, when funding research. The EB Research Partnership was able to establish this type of relationship first with universities, and later with pharmaceutical companies. Annie Kennedy, of the Parent Project Muscular Dystrophy (PPMD), then discussed the PPMD’s efforts to serve as conveners to bring together the appropriate patient, provider, researcher, and regulatory stakeholders to improve the lives of patients affected by Duchenne and Becker muscular dystrophies. She discussed how their efforts have led to an enhanced pipeline of treatments, the establishment of the Muscular Dystrophy Coordinating Committee, a regulatory approval program to provide a patient voice to the Food and Drug Administration, and a Certified Care Network where treatments and outcomes are standardized for patients.

Breakout Session—Policies to Enhance Clinical Research

The breakout session titled, "Policies to Enhance Clinical Research," was presented by Shahnaz Khan, M.P.H., and Anna Nicholson, M.S.H.S., of NIAMS. They provided an overview of clinical research, explaining that clinical trials are a component of clinical research that involve interventions with the goal of determining new ways to prevent, detect, or treat disease. They described the NIAMS Clinical Trials Program, which focuses on investigator-initiated projects covering both broad areas and specific conditions. They reviewed the solicitation and review process, and identified clinical trial opportunities in musculoskeletal, skin and rheumatic diseases, including observational studies, exploratory (pilot) grants, and planning and implementation cooperative agreements. They provided updates on Human Subjects Regulations and Policy, specifically related to the Common Rule, data sharing, the NIH definition for clinical trials, and central Institutional Review Boards.

Breakout Session—Innovative Partnerships

The breakout session titled, Innovative Partnerships, was presented by Yan Wang, M.D., Ph.D., of NIAMS (in lieu of Su-Yau Mao, Ph.D.); Becky Minnillo, D.M., M.P.A., of the Society for Investigative Dermatology(SID); and Eryn Marchiolo, M.P.H., of the Rheumatology Research Foundation. Dr. Wang provided an overview of the innovative Accelerating Medicines Partnership, its goals, structure, study sites and planned research phases. Dr. Minnillo described a new program devised by the SID and implemented at the organization’s yearly conference. Described as a type of "speed dating" for researchers and industry, SID matches and schedules short meetings between researchers looking for resources and industry partners looking for ideas to support. The program was started in 2013 and continues to grow. Ms. Marchiolo described the RRF’s career development bridge funding programs, including the K Bridge Award, the K Supplement Award, and the R Bridge Award. All are designed to provide promising researchers with financial support during vulnerable times in their careers. The additional awards keep early-stage investigators afloat while they work towards achieving NIH funding. The programs are very popular and boast about a 50 percent success rate.

Breakout Session—Best Practices for Sharing Health Information Online

The breakout session titled, Best Practices for Sharing Health Information Online, was presented by Quardricos Driskell, M.P.P., of the National Psoriasis Foundation, Cindy McDaniel of the Arthritis Foundation, and Mimi Lising, M.P.H., of NIAMS. Mr. Driskell described "Talk Psoriasis", an online support community that connects people with psoriasis and psoriatic arthritis, their families, caregivers and health professionals. Discussions centered on treatments, supplements, diet changes, and herbal and home remedies are particularly popular. Ms. McDaniel described the Arthritis Foundation’s (AF) new brand and value proposition, the Champion of Yes, which focuses on personalized health and support. The AF developed several digital resources—the Arthritis Resource Finder, Your Exercise Solution, and an upcoming digital Better Living Toolkit—based on members’ preferences for personalization, curation, referral, and digital and mobile platforms. Ms. Lising described the status of the NIAMS National Multicultural Outreach Initiative, stating that NIAMS will be sunsetting its popular A Year of Health multicultural planners, and is now exploring new approaches for the next phase of its initiative. She requested that meeting attendees identify their organization’s staff member responsible for health information/multicultural outreach. She plans to follow up with them to learn about ongoing and upcoming initiatives geared toward diverse and underserved audiences, in an effort to identify areas where NIAMS can fill unmet needs.

The NIH Precision Medicine Initiative (PMI) Cohort Program

Gwynne Jenkins, Ph.D, Senior Policy Analyst in the NIH Office of Science Policy (in lieu of Kathy Hudson, Ph.D.), spoke about the Precision Medicine Initiative (PMI) Cohort Program. She began with an overview of the PMI, announced by President Obama on January 30, 2015. She presented the broad objectives of the "million person cohort," a national study where participants’ genetics, biospecimens, and factors such as lifestyle habits and environmental exposures, will be analyzed to better understand the variables that contribute to health and disease.

Dr. Jenkins explained that in order to address a number of technology and policy issues, the Precision Medicine Initiative Working Group of the Advisory Committee to the (NIH) Director (ACD) was formed in March 2015 and charged with developing a framework for creating and managing the PMI research cohort. In September 2015, the PMI Working Group completed that task and presented their blueprint for the design and execution of the PMI Cohort Program in a report titled, "The Precision Medicine Initiative Cohort Program — Building a Research Foundation for 21st Century Medicine." Dr. Jenkins highlighted the recommendations in the report and engaged in a lively Q&A with the audience.

Concluding Remarks

Ms. Linde and Ms. Wheatley closed the meeting by thanking all the participants, organizers and speakers. Ms. Wheatley also encouraged participants to stay engaged with the Coalition, and to continue to collaborate and share knowledge and expertise with one another. She described the incredible impact of social media over the years. In 2013, there was one tweet during the Coalition meeting compared to more than 140 tweets at the 2015 meeting, resulting in a collective reach of more than 120,000 Twitter users. Finally, she encouraged everyone to complete the event evaluation form, and to be sure to join the Coalition LinkedIn group.

Last Reviewed: