Newsletter

The Research Advocate, our award-winning membership newsletter, provides the latest news and information on medical, health and scientific research advocacy, as well as reports from Research!America and member organizations. Regular features include policy articles, profiles of Research!America members, media coverage of research advocacy issues, a column by Research!America President and CEO Mary Woolley, and important updates to help our members in their own efforts to make research to improve health a higher national priority. For questions or comments contact Jennifer Deist, editor@researchamerica.org

In This Issue of The Research Advocate: may/june 2018

From Research!America

Advocates Around the World March for Science Visibility

Scientists, students and science enthusiasts came out in droves for March for Science events in Washington, D.C., and globally on Saturday, April 14. Thousands gathered to call attention to how science serves society and increase the visibility of science. Only 16% of Americans can name a living scientist, according to a survey commissioned by Research!America.

“The problem is that for 20 years that 16% has not changed, and that is one of most important reasons for the March for Science: to put a human face on the science enterprise and being a stakeholder for science,” said Mary Woolley, president and CEO, Research!America, during a pre-march rally at the American Association for the Advancement of Science.

The 250 satellite marches took place in cities around the world from Hawaii to Abuja, Nigeria. Former Research!America communications intern and Stanford University Postdoctoral Fellow Caitlin Grzeskowiak attended the San Francisco/Bay Area march with fellow science advocates. In a blog article about her experience at the march, she said “I hope scientists continue to encourage each other to get involved in outreach efforts and mentor the next generation of scientists to do the same. We may find it difficult at times to incorporate public outreach into our research, but without such efforts, we would not have the support, public trust, or funding to ask the important questions.” Research!America communications intern and biomedical engineer Samantha Swamy participated in the Washington, D.C. march, and in a blog article, called on scientists to make their work more accessible to the public.

The March is over, but until next year, science advocates are encouraged to build on the momentum of the event by engaging with the public and policymakers in their communities. 

For more information on current March for Science initiatives, visit: https://bit.ly/2qMoIYT

To watch a video of the AAAS pre-March rally, visit: https://bit.ly/2K3f3oM

Changing Hearts and Minds for Research – Mary Woolley Delivers Keynote at GWU

Speaking to a crowd of young scientists and faculty, Research!America president and CEO Mary Woolley emphasized how important advocacy for research is to the future of our nation during George Washington University’s Research Days on Wednesday, April 11. “Advocacy is about making a case for something you are passionate about and proud of being part of,” she said. “And like anything else, when you’re trying to convince people to be on your side of a movement, it’s about building relationships.”

Woolley cited a Research!America public opinion survey that shows a majority of Americans say it is important for scientists to engage with policymakers and the public, calling on attendees to convey their research in a way that appeals to both people’s hearts and minds. When advising science students on how best to communicate the value of their work to elected officials, Woolley asked, “What do you have in common with your elected officials? You may disagree with them on many issues, that’s perfectly normal, but you have something important in common with them. And that is serving the public’s interest. That’s how they identify themselves and I would suggest that’s how you should identify yourselves.”

Federal Policy Update

Not long after the passage of the omnibus, rumors began to circulate that House Majority Leader Kevin McCarthy (R-CA) and President Donald Trump were discussing possible cuts, or rescissions, to non-defense discretionary funding. Though multiple reports suggest Congress is unlikely to accept any proposed rescissions package, the law requires the proposed funding to be impounded for 45 days, essentially freezing related activities at agencies facing potential cuts. Given that FY18 funding wasn’t resolved until nearly half the fiscal year had passed, further delays simply set the stage for needless operational challenges and missed opportunities. Research!America joined the science advocacy community in encouraging individuals to speak out against triggering a rescissions process.

In addition to monitoring developments with respect to FY18 appropriations, we continue to advocate for robust budget growth in FY19. Based on the deal to raise the caps, there is only an additional $5 billion over FY18 levels available for increases in non-defense discretionary spending in FY19.  Securing the funding NIH, CDC, FDA, AHRQ, NSF and other science agencies need to advance our nation’s strategic objectives will require difficult budget tradeoffs.  We are working to make the case that FY19 increases for medical, scientific and public health research needs to be a top national priority, and that the funding needed to advance the respective missions and objectives of these key agencies should be prominent in any long-term strategy aimed at securing our nation’s future health, fiscal and homeland security, and prosperity.

The Senate HELP Committee has produced bipartisan legislation to address the opioid epidemic and is in the process of assessing the nature and scope of potential amendments should the bill move to the Senate floor. On the House side, the Energy and Commerce Subcommittee has also been drafting a package of opioid-related legislation that they hope to bring to the floor by Memorial Day.

At the request of the Senate HELP Committee, Research!America drafted two letters recommending that NIH and FDA provide technical assistance before pursuing Senate passage of H.R. 70. This legislation -- intended to ensure the integrity of advisory committees -- unfortunately contains language that could compromise peer review and advisory committee processes at agencies like NIH, NSF and FDA. Reportedly the bill is now on hold pending further review.

President Trump is expected to deliver his first major speech on the topic of drug pricing this month. In a midterm election year, it is unlikely that Congress will act on any proposed legislation. Although details of the president’s proposal are unknown, we will continue to make the case that reducing health spending and increasing access to high quality, affordable health care without compromising desperately needed medical progress requires a systems approach, one that balances the many interwoven health care cost variables that influence spending.

Scientists Step Up Their Community Engagement and Advocacy

Speakers shared insights on fostering greater interaction between scientists and non-scientists during an April 18 webinar titled “Inspiring Others to be Science Advocates” hosted by the Society for Neuroscience (SfN) and Research!America. The webinar was the third in a series of four aimed at strengthening advocates’ understanding of science communication, policy and public opinion research on the scientific enterprise.

“I found that since the election in 2016, it doesn’t take much to get people interested [in advocacy],” said Dr. Monica Linden, senior lecturer at Brown University. “What I find is really helpful for keeping them interested is showing them how easy some of these advocacy efforts can be.” Linden said organizations like SfN are a great resource for advocacy resources, including methods for contacting lawmakers.

Cynthia Gibbs, founder and director of Science Pub RVA encouraged scientists to participate in informal lecture and discussion series, such as the ones her group organizes. “People are hungry for meaningful experiences, community connection and learning about what you do, why you do it, why it matters,” Gibbs said, adding that scientists should try to connect emotionally with the audience and “think about what you will give them, the takeaways, the experience, the feelings they’ll have.”  

Dr. Rick Karnesky, co-boss, Nerd Nite East Bay, said the best way to engage the public is to get off campus and go to where the public hangs out. He added that good science communication is often highly interdisciplinary, and he encouraged scientists to work with artists, podcasters, media and musicians to create memorable presentations. “Some of the most successful science communication doesn't reek of science communication,” Karnesky said.

To watch a recording of the April 18 webinar, click here

Experts Call for Increased Funding, Patient Centricity in Migraine Research

Nearly one in four households include someone who suffers from migraine, however few effective treatments are available for patients. A panel of experts discussed the current state of migraine research, funding, and need for patient involvement during a webinar titled “What are the Barriers in Advancing Migraine Research?” on April 11 hosted by Research!America.

 “Our voices are important,” said patient advocate Katie Golden who emphasized the need for patient centricity in migraine research. “Ask patients about the outcomes that are important to us. I believe that everybody throughout the entire process, whether you’re a researcher or scientist or salesperson of a drug, needs to be connected to the patient story and who they are ultimately trying to help.”

Dr. Robert Shapiro, Department of Neurological Sciences, Larner College of Medicine at the University of Vermont, said migraine is the least funded of the most burdensome diseases. He called for an aggressive recruitment of investigators to study migraine. Dr. Michael Oshinsky, program director, pain and migraine, National Institute of Neurological Disorders, described current funding opportunities for researchers at the NIH including the HEAL initiative, which aims to understand the origins of chronic pain.

To view a recording of the webinar, supported in part by Amgen, click here.  

Submit Nominations for 2019 Advocacy Awards

Nominate outstanding individuals or organizations for Research!America's 2019 Advocacy Awards! If you know exemplary leaders in medical, health and scientific research whose advocacy efforts have significantly advanced our nation’s commitment to research and innovation, and brought us closer to cures for deadly and disabling diseases, submit a nomination today. The deadline is Friday, May 18. Awards will be presented at a dinner on Wednesday, March 13, 2019, in Washington, D.C. For more information, click here.

Nursing Research in the Age of Twitter

How do you convey nursing research and interventions that resonate with policymakers, media and the public on social media? Johns Hopkins University School of Nursing (JHU SON) students, scholars and faculty participated in Research!America’s “Maximizing Nursing Research and Digital Storytelling” workshop held at JHU SON on April 26. Research!America Vice President of Communications Suzanne Ffolkes and Director of Communications Anna Briseño shared effective techniques for storytelling on social media and digital platforms such as blogs and podcasts.

During the half-day workshop, attendees participated in a Twitter chat focused on how nursing and public health researchers can play a role in preventing and treating opioid misuse and addiction. The Twitter chat, #opioidcaretalk, was facilitated by JHU SON Dean Dr. Patricia Davidson. The American Public Health Association joined the interactive discussion which generated more than 7 million Twitter impressions. “I think it’s a really great platform for disseminating information,” said Rebecca Piasecki, a Ph.D. student who studies critical care. “It was great to learn about that…methods and tips and tools to make that dissemination more effective and reach more people.” 

Participant Safiyyah Okoye, a JHU SON Ph.D. student whose research focuses on improving healthcare for people with complex health and social needs, said that the Twitter chat helped her navigate the nuances of hashtags, handles, and responses. A key takeaway for participant Kelly Robinson, a JHU SON Ph.D. student who studies maternal health outcomes for homeless women, was that social media can be a valuable tool for networking in the field and increasing the visibility of research making it part of “a conversation that is more regularly discussed.”

Congressional Briefing on Advances in Asthma Research

Achieving progress against diseases like asthma which affects more than 25 million Americans is a multi-faceted, public and private sector-funded process, spanning basic science, clinical research, health services research and other critical research disciplines. A panel discussion titled “From Discovery to Delivery: The Role of Research in Addressing Asthma” will explore the importance of, and crucial interactions between, multiple research disciplines as scientists seek to prevent, treat and ultimately cure, severe asthma. The briefing will be held Tuesday, May 15, 1 – 2 p.m. ET in the Rayburn Office Building on Capitol Hill in Washington, D.C. 

Featured panelists include: Dr. Peter Gergen, National Institute of Allergy and Infectious Disease; Dr. Rohit Katial, GlaxoSmithKline; Cara Kraft, RRT/RCP, AE-C, Allergy and Asthma Network; Dr. Tyra Bryant-Stephens, Children’s Hospital of Philadelphia; and Dr. Judith Woodfolk, University of Virginia School of Medicine. Dr. Eleanor Perfetto, National Health Council, will moderate the discussion. 

After the briefing, the “Walk in My Shoes Challenge” Asthma Interactive Experience will enable participants to gain an understanding of what it is like to experience an asthma attack. For more information and to RSVP, click here

Maximizing Nursing and Health Research to Increase Public Support

Communicating the health and economic impact of nursing and health research to decision-makers is essential to assure increased investments from the public and private sector. University of Miami School of Nursing and Health Studies hosted a workshop facilitated by Research!America Vice President of Communications Suzanne Ffolkes on Monday, April 23 for faculty interested in learning more about effective communications for different audiences. Attendees agreed that creating a narrative about research that resonates with non-scientists is key to building relationships and generating public support. They recognize that the social and economic benefits of health research, ranging from HIV treatment and prevention, domestic violence interventions, studies on the social determinants of depression and the cardiometabolic consequences of cannabis use, should be shared with potential funders.

Celebrate Nurses May 6–12

For National Nurses Week, May 6 to May 12, Research!America and member nursing schools and organizations will shine a light on the important contributions nurses and nurse researchers make to the health and well-being of Americans and individuals worldwide.

This year’s theme, “Nurses: Inspire, Innovate, Influence,” reflects the widespread impact of nurses in health research and patient care. The American Nurses Association (ANA) has led the annual celebration since 1994 to honor the birthday of modern nursing’s founder Florence Nightingale.

From conducting research on evidence-based improvements to care, translating research findings into practice, to advocating for policy change or serving as full partners on health care teams, nurses play an integral role in improving health and health care delivery. Join Research!America in honoring the country’s 3 million registered nurses. To learn more about National Nurses Week, click here

Action Alert

Urge Congress to Support Funding for Research

Congress recently completed an appropriations bill for fiscal year 2018 (FY18) that included meaningful and crucially important budget increases for our nation’s science and health agencies. The president signed the legislation into law on March 23, 2018.

The Trump Administration and House majority leadership are reportedly considering whether to pursue retroactive cuts to the new appropriations law that would target non-defense discretionary spending. Such an effort, if successful, could mean cuts to NIH, FDA, CDC, NSF, AHRQ and other agencies leveraging research to speed medical and public health progress.

Take action now: http://bit.ly/2w9B1nr.

Special Thanks to our Supporters and Research!America Alliance Members

RESEARCH!AMERICA EXTENDS SPECIAL THANKS TO OUR SUPPORTERS WHO HAVE CONTRIBUTED SINCE THE PUBLICATION OF OUR April NEWSLETTER.

2018 Advocacy Awards

Celgene 

Horizon Pharma 

The Rosenfeld Heart Foundation

UCLA 

Program Support 

Celgene

PCORI

Visit www.researchamerica.org/partnership_opportunities for ways to support Research!America.

SPECIAL THANKS TO NEW AND RENEWING RESEARCH!AMERICA ALLIANCE MEMBERS 

New Members

Boston Children’s Hospital

Horizon Pharma

University of Hawaii John A. Burns School of Medicine

Renewing Members

AdvaMed

American Association for Cancer Research

American College of Sports Medicine

American Dental Association Health Policy Institute

American Dental Education Association

American Society for Nutrition

American University

Aultman Hospital

Children’s Research Institute at Children’s National Medical Center

debra of America

Duke University School of Nursing

Feinberg School of Medicine, Northwestern University

Global Liver Institute

Harvard School of Dental Medicine

Howard Hughes Medical Institute

La Jolla Institute for Allergy and Immunology

Lupus and Allied Diseases Association

Milken Institute School of Public Health at The George Washington University

Myasthenia Gravis Foundation of America, Inc.

National Medical Association

Oral Health America

Prostate Cancer Foundation

Sanofi

The Smith-Kettlewell Eye Research Institute

Society for Advancement of Violence and Injury Research

The University of Chicago Pritzker School of Medicine

University of California, Berkeley

University of California, Davis School of Medicine

University of Miami

University of Southern California School of Social Work

Washington University School of Medicine in St. Louis

As of May 3, 2018

Not yet a member? Join Research!America today at www.researchamerica.org/membership.

Regular Features

Chair's Letter

The Hon. Michael N. Castle, ChairAs we pivot from a positive outcome for research in the FY18 appropriations process -- $3 billion increase for the National Institutes of Health and substantial increases for other health agencies – we must now focus on securing those increases and advocating for science in FY19. Many of you know the White House is expected to send a rescissions package to Congress sometime in May which may include up to $11 billion in spending cuts impacting agencies such as the National Science Foundation, Food and Drug Administration, the Centers for Disease Control and Prevention and the Agency for Healthcare Research and Quality. Members of Congress need to hear from you before decisions are made. Learn more about how you can take action through Research!America’s advocacy webpage in this newsletter. We cannot become complacent when robust funding for research and public health is critical to combat major health threats affecting our friends, families and communities.

Research!America’s 2019 Advocacy Awards nominations are now open. The awards honor individuals and organizations whose leadership efforts have been notably effective in advancing medical progress and innovation. Deadline for nominations is Friday, May 18. The awards will be presented on Wednesday, March 13, 2019 at the 23rd Annual Advocacy Awards Dinner in Washington, D.C. The Advocacy Awards are made possible thanks to the generosity of our benefactors and sponsors who are dedicated to advancing scientific, medical and health research.

For the midterm elections, now is the time to ask congressional candidates whether they would assign a high priority to research for health. Hold candidates and elected officials accountable and urge them to support policies that will enable our nation’s scientific enterprise to thrive. Advocate for science in your community this election season!

Member Spotlight: Arthritis Foundation

Founded: 1948

Location: Atlanta, GA

Mission: The Arthritis Foundation is boldly pursuing a cure for America’s #1 cause of disability, while championing the fight against arthritis with life-changing resources, science, advocacy and community connections.

Anna HydeLeading the fight for the arthritis community, the Arthritis Foundation helps conquer everyday battles through life-changing information and resources, access to optimal care, advancements in science and community connections. The organization’s goal is to chart a winning course, guiding families in developing personalized plans for living a full life – and making each day another stride towards a cure. The Foundation publishes Arthritis Today, an award-winning magazine that reaches 4.2 million readers.

In honor of Arthritis Awareness Month (May): the Arthritis Foundation is asking all Americans to rally and support its new cause campaign “Let’s Get a Grip on Arthritis,” so the disease can be eradicated once and for all. By conservative estimates, about 54.4 million Americans have doctor-diagnosed arthritis, and many can’t participate in the activities they love or even perform everyday tasks – such as chopping vegetables or buttoning their shirts – due to the pain, inflammation and/or joint disfigurement caused by their arthritis.

The Arthritis Foundation is very focused on medical research and advocacy work that will best serve the one in four Americans living with arthritis – from advancing treatments to providing resources.

“The nation faces several challenges that will threaten the research enterprise if we don’t continue to invest in and cultivate researchers, including increasing funding for the National Institutes of Health, which is critical, as investments in the NIH over the last two decades haven’t kept pace with inflation or the demand for newer, better treatments,” said Anna Hyde, vice president of advocacy and access, Arthritis Foundation. “In addition to advancing research, we must also help increase the pool of rheumatologists, without whom research breakthroughs wouldn’t reach patients.”

According to the American College of Rheumatology, there aren’t enough rheumatologists to serve the arthritis population, which is estimated to grow to more than 78 million Americans by 2040. Not only does the rheumatologist shortage create a barrier to care, but it also impedes advances in research and better understanding the disease.

“When looking at the rheumatology shortage, we know that advocacy can also play a significant role in correcting this issue,” said Anna Hyde. “Right now, we’re advocating with members of Congress to pass bipartisan legislation that would permit pediatric rheumatologists to be eligible to apply for loan repayment through the National Health Service Corps.”

A win like this would be a significant step forward towards addressing the shortage, in addition to expanding the number of rheumatology fellowship opportunities in communities with the greatest need.

Like Research!America, the Arthritis Foundation is dedicated to raising public awareness and pursuing groundbreaking research. The Arthritis Foundation is tirelessly committed to empowering people to live better, with higher quality of life and less pain; expanding the continuum of care to drive the best possible patient outcomes; and creating the next generation of diagnostic and treatment solutions, bringing them to market faster to get earlier more accurate diagnoses and treatments.

To learn more, visit www.arthritis.org.

 

From Washington

Top Ten Clinical Research Achievement Awards

“It is our responsibility that people know the truth,” said keynote speaker Dr. Robert Califf, urging attendees of the 2018 Top Ten Clinical Research Achievement Awards to  make their work more accessible to the public. “This is remarkable science. But the average person getting on the internet will believe what they read, not the evidence. We have to help people get the right information,” added Dr. Califf, former Food and Drug Administration commissioner and vice chancellor for health data and science at Duke Health and senior manager, Verily Science. 

The event, held on April 18 in Washington D.C., honored outstanding achievements in clinical research, such as the human trial of an anti-Zika virus DNA vaccine, and the effects of long-term use of steroidal injections for knee osteoarthritis. Research!America board members Dr. E. Albert Reece, dean, University of Maryland Medical School, and Dr. Herbert Pardes, executive vice chairman, NewYork-Presbyterian Hospital, commended the researchers on their achievements, citing the impact of clinical research on health and health care delivery. 

NIH All of Us Research Program Launches May 6

On May 6, the National Institutes of Health (NIH) will open national enrollment for the All of Us Research Program, an important milestone in advancing individualized prevention, treatment and care. People age 18 and older, regardless of health status, will be able to enroll. An online program featuring NIH Director Dr. Francis Collins, and community events in seven cities will take place on May 6. Volunteers will join more than 25,000 participants already enrolled in All of Us as part of a yearlong beta test to prepare for the program’s national launch. The goal is to enroll 1 million or more volunteers and oversample communities that have been underrepresented in research to make the program the largest, most diverse resource of its kind. Collected data will be broadly accessible to researchers to support thousands of studies. For more information, visit www.allofus.nih.gov

In the News

Media Matters

March for Science

Mary Woolley, President and CEOMary Woolley, president and CEO, Research!America was profiled on the Bio Report podcast to discuss the second annual March for Science, public perception of science, and the state of funding for science in the United States.

Woolley was quoted in The Washington Post and Buzzfeed about the importance of events like the March for Science in connecting with non-scientists.. “This is all about making science visible to the public.”

Research!America board member Rush D. Holt, Ph.D., CEO, American Association for the Advancement of Science, was profiled in The Scientist about Rush D. Holt, Ph.D.researchers’ involvement in the event. “The March for Science has become an important symbol, as well as an important occurrence, because it reminds scientists and the public that there is a public dimension to the work of scientists, and an obligation of scientists to create and maintain the support of the society in which they work.”

Opioid Crisis

Georges Benjamin, M.D.In a Morning Consult article about the proposed Senate and House bills to combat the opioid crisis Georges Benjamin, M.D., executive director, American Public Health Association, commented that a continuous, reliable funding stream is essential to tackling the opioid epidemic.

Population HealthHarold L. Paz, M.D., M.S.

Research!America board member Harold L. Paz, M.D., M.S., EVP and CMO, Aetna, was quoted in a Health IT Analytics article about Aetna and Harvard T.H. Chan School for Public Health’s new population health research initiative. “Our work with faculty at the Harvard Chan School will provide us with a wealth of data on this subject, allowing us to enhance our strategy and create innovative new programs that can help improve the well-being of those we serve.”

Election Year and Science

The Journal & Courier (Indiana) published a letter-to-the-editor penned by Woolley urging scientists to engage with the public and decision-makers to elevate the visibility of the research enterprise. “Encourage others to join the movement to make science a higher national priority – including candidates running for office this election year.”

R&D

Elias Zerhouni, M.D.Research!America board member Elias Zerhouni, M.D., president, global research and development, Sanofi, was quoted in a Bloomberg article about duplication of efforts in the drug development process.

Cost of Caregiving

Nancy BrownIn a Medscape article about a new analysis from the American Heart Association analyzing the cost of informal caregiving for patients with heart disease and stroke, Research!America board member Nancy Brown, CEO, American Heart Association, commented on the increased burden placed on family members and friends caring for patients outside the formal health care system.

 

Health ITJames Madara, M.D.

In an Fierce Healthcare article about the American Medical Association’s (AMA) investment into Health2047, an innovation enterprise, Research!America board member James Madara, M.D., EVP and CEO, AMA said that the support helps “improve both care delivery and health outcomes to benefit the nation’s physicians and their patients.”

Media Contacts

Suzanne Ffolkes
VP Communications
571-482-2710

Anna Briseño
Senior Manager of Communications
571-482-2737

We have health challenges in this country that science will provide answers for if given the chance and we haven't given science that opportunity
Mary Woolley, President and CEO, Research!America