the promise of research

2015 ANNUAL REPORT LETTER FROM LEADERSHIP inside Turning a Moment Into a Movement

esearch advocates had plenty to cheer about in 2015 as congressional leaders and the 1 Letter from Leadership White House stepped up to the plate to re-energize our national commitment to research 2 Advocacy Overview Rand innovation. Along with the Campaign for Cures, the ‘moonshot’ initiative to defeat cancer has created a new sense of optimism for medical research and finding solutions to diseases 4 2015 Advocacy Awards that threaten our health, livelihood and economic security. Half of say they are even 5 Connecting the Dots: Effectively Communicating Science to Non-Scientists willing to pay more in taxes to support cancer research, our national public opinion survey shows, with significant support for a tax hike across the political spectrum. The likelihood of a tax increase 6 AACP Advocacy Workshop Freshmen Congressional Briefing aside, enthusiasm for medical progress has been evident on Capitol Hill as champions for research on both sides of the aisle reached agreement on a deal that raised budget caps for defense and 7 From Discovery to Delivery: Research at Work Against Heart Disease discretionary spending, providing substantial funding increases for the federal health agencies. Webinar on Health Services Research

8 2015 National Health Research Forum Indeed, the FY16 omnibus included a $2 billion increase Research!America continues to keep our finger on the for the National Institutes of Health, the largest increase pulse of the latest Capitol Hill developments, public 9 Rally for Medical Research Hill Day for the agency in more than a decade, and additional sentiment, coalition activities, media coverage and social 10 Campaign for Cures dollars for the Centers for Disease Control and Preven- media conversations. We will work closely with congres- tion, the Food and Drug Administration and the National sional leaders to bring medical innovation bills across the 11 Janssen Town Hall Science Foundation. As a result of intense advocacy on finish line, educate policymakers about the critical role of behalf of the Agency for Healthcare Research and Quality social and behavioral research in addressing major health 12 Thank You Day (AHRQ), the agency’s budget was spared deep cuts, but challenges, and advocate to lift the ban on gun violence Communicating the Value of Nursing Research given the importance of its work in addressing inefficien- prevention research under the auspices of the Centers 13 Encouraging Department Chairs cies in our health care system the agency remains sorely for Disease Control and Prevention. to Lead Research Advocacy underfunded. We will continue to insist that AHRQ is How Fast to Cures essential to assuring that the groundbreaking discoveries We will continue to monitor and comment on issues that that deepen our understanding of how to treat and impact the work of our member organizations. During 14 Media prevent complex diseases benefit patients in a safe the election season, our national voter education initiative, 15 Donors/Staff and efficient manner. Campaign for Cures: Vote for Medical Progress, aims to inform all candidates running for national office that 16 Board of Directors Congress also made significant strides in removing research for health is a priority for voters and must be barriers to private sector innovation with a tax extenders given the attention it deserves on the campaign trail. Inserts package that improves the R&D tax credit and makes If we hope to win the battle against current and emerging it permanent, and also suspending the health threats, policymakers, candidates and the public Membership tax for two years. These actions, along with the funding must hear from research advocates. This we can do. Investment in Research and boost, enable medical innovation to move at a faster Let’s make it happen! U.S. Biomedical Innovation pace, bringing state-of-the-art medical devices and cures Financial Statements to patients. The research continuum thrives on both Scientific Advisory Committee public and private sector investments aimed at advancing treatments and disease prevention strategies. Partner- ships in precision , cancer, Alzheimer’s research Research!America is the nation’s largest 501(c)(3) alliance and other ambitious projects are critical to leveraging working to make research to improve health a higher big data, resources and collaborating brainpower to turn national priority. Research!America’s member organizations this moment for research into a movement that can be together represent the voices of more than 125 million sustained over time. The Honorable Mary Woolley Americans. Our public opinion surveys, advocacy programs, John Edward Porter President and CEO Chair and publications reach the public and decision makers to help advance medical, health and scientific research.

the promise of research 1 ADVOCACY OVERVIEW

elevating medical and health research on capitol hill

he value of medical research innovation is exten- budget cuts or termination, and established a Moderated by Lisa Simpson, M.B., B.Ch., M.P.H. sive and transformative, providing broad benefits permanent and enhanced R&D tax credit. We also president and CEO of AcademyHealth, the webinar T st to public health, security, and the economy. Together played an active role in advancing the 21 Century featured remarks from AHRQ director Richard with our more than 360 alliance member organizations, Cures Act (H.R. 6), groundbreaking bipartisan Kronick, Ph.D., followed by a moderated discussion Research!America successfully advocated for crucial fund- legislation to bolster the discovery, development, and audience questions. ing and pro-innovation policy changes. We helped secure and delivery pipeline. H.R. 6 passed the House meaningful funding increases for research agencies, with overwhelming bipartisan support. suspended the medical device tax, protected the Agency During 2015, Research!America took part in New Initiatives in 2015 for Healthcare Research and Quality (AHRQ) from drastic 145 meetings with Congressional offices, and our Research!America pursued other new projects in members joined us on 16 action alerts to Congress. 2015; for example, we convened expert stakehold- When Research!America spearheaded a letter to the ers, researchers and leaders from the Food and Committee on Energy and Commerce in support of Drug Administration’s Center for Biologics Evaluation Benefits of Investments in Research mandatory funding in H.R. 6, more than 180 organiza- Research (CBER) to discuss challenges in the regula- How important is investing in research to job creation, tions signed on. The House-passed bill included a tion of regenerative medicine and steps that can technological breakthroughs and economic growth? five-year Innovation Fund of $8.75 billion for NIH and be taken to improve current regulatory pathways. $550 million for FDA. We sent 25 other letters and We also launched a new project to explore evolving statements to Congress and/or the President in 2015 public perceptions of medical innovation and iden- on topics such as eliminating sequestration, repealing tify messaging that captures its multi-faceted individ- 5% the device tax, and the Next Generation Researchers ual and societal benefits. Not Too Important 2% Act. We held regular meetings and calls on a variety In preparation for the 2016 presidential and Not At All Important of topics, including patent reform and the Senate congressional elections, Research!America In 2015, Research!America took 5% Innovations Initiative. launched Campaign for Cures: Vote for Medical 34% Not Sure Progress!, a national voter education initiative aimed Somewhat at ensuring the urgent need for faster medical part in 145 congressional Important Policy and Advocacy Outreach progress is part of the national conversation during meetings, issued and sent We published 22 fact sheets highlighting the the election season. multifaceted benefits of medical progress. New Research!America is committed to ensuring 26 letters and statements, created fact sheets in 2015 covered health issues such as 2016 brings more action to help our nation realize amyotrophic lateral sclerosis (ALS), rare diseases and the unprecedented potential of public and private 22 fact sheets and spoke eating disorders. Research!America also collaborated sector funded medical innovation. If our nation with partners and subject matter experts on a special makes medical progress a top priority, we can find at 42 events. 55% fact sheet series on oral health, highlighting the solutions to what ails us. Very Important role oral health plays in systemic health, and the importance of continued research in this field. To strengthen advocacy in support of federal funding for health services research (HSR) Research!America hosted an AHRQ webinar to highlight the agency’s accomplishments and discuss Source: A Research!America survey of U.S. adults conducted in partnership with Zogby Analytics in January 2016. the crucial role HSR plays in our health care system.

2 research!america 2015 annual report the promise of research 3

2015 Effectively Communicating connecting advocacy Science to Non-Scientists the dots

awards cientists should be able to inform policymakers S about the implications of science, clearly explain research to media and tell their grandmothers the importance This two-day workshop Honorees of the latest scientific breakthrough, according to a participant The annual Research!America Advocacy Awards program was at the “Connecting the Dots: Effectively Communicating explored the challenges of established by the Board of Directors in 1996 to honor out- Science to Non-Scientists” two-day workshop co-hosted by standing advocates for medical, health and scientific research. effectively communicating science Recognized individuals and organizations are those whose Research!America and George Washington University (GWU) leadership efforts have been notably effective in advancing in April. Scientists and communicators from research institu- to non-scientists. Panelists our nation’s commitment to research. tions, government agencies, scientific societies and patient Edwin C. Whitehead Award for Medical Research Advocacy: groups across the country and abroad participated in interac- challenged assumptions about Reps. Fred Upton (R-MI) and Diana DeGette (D-CO) for their com- tive sessions on ways to improve communication with the mitment to advancing the discovery, development and delivery Robin Roberts translating complex scientific of lifesaving medical treatments. The 21st Century Cures Act, public, media, donors, and other key decision makers. bipartisan legislation spearheaded by Reps. Upton and DeGette, underscores their dedication to supporting medical progress data into meaningful, and innovation. Trailblazers in medical, health Isadore Rosenfeld Award for Impact on Public Opinion: emotional stories. Robin Roberts anchor of ABC’s “Good Morning America” for and scientific research were honored her courageous and public battle with breast cancer and MDS or myelodysplastic syndrome, a disease of the blood and bone at Research!America’s 2015 Advocacy marrow, and efforts to increase awareness about the National Marrow Donor registry. Awards Dinner held in March at the Gordon and Llura Gund Leadership Award: Michael Milken founder of the Milken Institute and FasterCures for leading a Mellon Auditorium in Washington, D.C. Important for Scientists to range of initiatives for more than four decades that have sup- Engage with Public on Research ported public health, re-envisioned education, expanded access How important is it for scientists to inform to capital, and accelerated medical research. Workshop participants elected officials and the public about their Raymond and Beverly Sackler Award for Sustained National research and its impact on society? Leadership: Kenneth Olden, Ph.D., director of the National The workshop included mock interviews with former Center for Environmental Assessment, U.S. EPA, for championing community-based participatory research in the U.S. and his con- CNN White House correspondent, anchor and Washington tribution to cancer research. Bureau Chief Frank Sesno, director of GWU’s School of 5% Not Very 2% Geoffrey Beene Builders of Science Award: David Van Andel, Media and Public Affairs, breakout sessions, and lively Important Not At All Important Chairman and CEO of Van Andel Institute in Grand Rapids, and group discussions about generating compelling stories to George Vande Woude, Ph.D., director of the National Cancer connect with non-scientists. “A workshop of this sort should Institute’s Basic Research Program. Van Andel Institute has be- come a major contributor to science with the recruitment of top be incorporated into every scientific curriculum,” said 10% scientists and funding support and Vande Woude is among the participant Debra Cooper, Ph.D., a CCST Science Policy Not Sure pioneers who laid the foundation for the understanding of the Fellow, California Legislature, Senate Office of Research. molecular basis of cancer. 33% The sessions were led by an esteemed group of Somewhat Important Paul G. Rogers Distinguished Organization Advocacy Award: experts with backgrounds in science, communication and The Society for Neuroscience for advocating for robust funding to advance science and health, and for policies that support (L to R) Hon. Michael Castle; Rep. Diana DeGette; media. Research!America board members, Jay Gershen, responsible animal research. Rep. Fred Upton; Mary Woolley D.D.S., Ph.D., president, Northeast Ohio Medical University; Mary Hendrix, Ph.D., president and scientific director at The Stanley Manne Children’s Research Institute; Susan Dentzer, senior health policy advisor at the Robert Wood 51% Johnson Foundation; Keith Yamamoto, Ph.D., executive vice Very Important dean, UCSF school of medicine; and Alan Leshner, Ph.D., CEO Emeritus, American Association for the Advancement of Science delivered real world and memorable examples on how to enhance effective communication techniques. Several instructors from GWU also led sessions ranging from improving presentation skills to developing dynamic Source: A Research!America and ScienceDebate.org survey of U.S. adults social media messages. conducted in partnership with Zogby Analytics in September 2015. Michael Milken (L to R) Lucinda Maine Ph.D., R.Ph.; (L to R) Tom Hutton; Mara Hutton; George (L to R) Sudip Parikh, Ph.D.; Kenneth Olden, Ph.D. Vande Woude, Ph.D.; David Van Andel Steven E. Hyman, M.D.

4 research!america 2015 annual report the promise of research 5 from discovery to delivery: research at work aacp against heart disease

advocacy workshop eart disease is public enemy number one, H according to Lisa Simpson, M.B., B.Ch., M.P.H., president and CEO of AcademyHealth, moderator of the congressional briefing, “From Discovery to Delivery: he American Association of Colleges of Pharmacy Research at Work Against Heart Disease,” co-hosted by T (AACP) Academic Research Fellows say they Research!America, The American Heart Association, and plan to use tips shared at a half-day advocacy and WomenHeart on April 28 in Washington, D.C. Speakers communications workshop on November 19 hosted by representing various aspects of the research continuum Research!America to build stronger relationships with spoke to congressional staffers, research stakeholders elected officials, potential funders, media and non- and patient advocates about heart disease research from (L to R) Andrew Zalewski, M.D., GlaxoSmithKline; Shobha scientists. The workshop featured presentations by discovery, development to delivery. Ghosh, M.D., Virginia Commonwealth University Medical Research!America staff on the latest developments in Opening the discussion, Denise Sullivan, a Woman- Center; Denise Sullivan; Lisa Simpson, M.B., B.Ch., M.P.H., Congress on proposals relevant to AACP’s mission, Heart Champion and heart disease survivor, shared her AcademyHealth; Harry P. Selker, M.D., Tufts University recommendations on how to connect with policymakers, story and history of family losses associated with heart public perception of science and scientists, and interac- disease. Sullivan stressed that without funding for heart The discussion touched on the importance of basic tive sessions on fine-tuning communications techniques disease research, she would not be alive today. research, the future of precision medicine, improvements such as message development and elevator speeches. Other panelists included: Shobha Ghosh, M.D., profes- in clinical trials, and the need for greater use of electronic Medpage Today news editor Joyce Frieden was a guest sor at Virginia Commonwealth University Medical Center; health records. The panelists implored researchers and speaker for the program. She encouraged the Fellows Andrew Zalewski, M.D., vice president and head unit physi- policymakers to think about how the research continuum to work with their communications colleagues in crafting cian in the cardiometabolic therapy area at GlaxoSmithKline; can be streamlined to increase efficiency, and empha- compelling pitches for reporters on research issues that and Harry P. Selker, M.D., M.S.P.H., dean of Tufts Clinical and sized that health services research is key to implementing would be of interest to their readers. Translational Science Institute at Tufts University. medical advances in the real world. AACP Academic Research Fellows

freshmen congressional briefing webinar on health services research esearch!America partnered with United for Medical legislative draft, but also actively participated in the R Research and FasterCures to convene a bipartisan session. The briefing was held just two days after the he Agency for Healthcare Research and ensure the agency receives the necessary funds to congressional breakfast meeting in the Longworth House release of the second legislative draft and one day after T Quality (AHRQ) is diligently working to improve advance this lifesaving work. Office Building on May 1 for freshmen members of Congress the House Energy and Commerce Health Subcommittee the quality and safety of care that Americans receive, Dr. Kronick pointed to AHRQ-funded research that to meet National Institutes of Health (NIH) director Francis hearing on the 21st Century Cures Act (H.R. 6). according to AHRQ Director Richard Kronick, Ph.D. But helped to decrease deadly central-line associated infec- Collins, M.D., Ph.D. Dr. Collins provided an overview of NIH, emphasizing the agency’s mission is relatively unknown outside the tions in intensive care units (ICUs). AHRQ worked with Mary Woolley, president and CEO, Research!America, its role funding research across all 50 states through the research community. On November 10, Dr. Kronick more than 1,000 ICUs across the country to implement Margaret Anderson of FasterCures and United for Medical peer-review system. He highlighted areas of promising and AcademyHealth president and CEO Lisa Simpson, its program to decrease central-line infections and other Research’s David Pugach each gave brief remarks welcoming research, particularly precision medicine and the BRAIN M.B., B.Ch., M.P.H., participated in a webinar hosted by hospital-acquired conditions, resulting in 50,000 fewer the group, and explaining the role their respective organiza- initiative. Finally, he explained how declining budgets have Research!America to highlight AHRQ’s accomplishments deaths between 2010 and 2013. “The best research and tions play in advocating for NIH and research broadly. adversely affected discovery and researchers. Members of and discuss the importance of providing the agency with evidence in the world doesn’t help if it’s not actually The event’s congressional hosts, House Energy and the freshman class had the opportunity to ask the director robust funding. Dr. Simpson urged the importance of com- implemented,” Dr. Kronick explained. “And we put a lot Commerce Chairman Fred Upton (R-MI) and Ranking Mem- specific questions and provide feedback, demonstrating municating “the amazing impact of the work of the agency of effort into trying to make sure that the healthcare ber Frank Pallone (D-NJ), not only kicked off the conversa- their interest in assuring a strong future for NIH and the and its importance and relevance to the questions Ameri- delivery system takes advantage of what is known about tion and updated the group on the new 21st Century Cures research ecosystem as a whole. cans are facing every day,” so that policymakers will how to improve quality and safety.”

6 research!america 2015 annual report the promise of research 7 national health rally research forum for medical research Leaders representing various sectors of the research community hill day expressed their views on legislative and regulatory challenges and our nation’s Research!America was a lead supporter research infrastructure at the Newseum in Washington, D.C. for a rally focused on making investments in biomedical research a higher priority.

esearch!America’s 2015 National Health Research ore than 300 research advocates from across R Forum, held in September at the Newseum, M the country urged Congress to make funding brought together a diverse group of panelists from industry, for the National Institutes of Health (NIH) sustainable and academia, patient groups, research institutes and govern- predictable during the 2015 Rally for Medical Research Hill ment for wide-ranging discussions on the theme “Straight Day on September 17. Research!America was a lead sup- Talk: Advocacy for a New Era in Science.” Jeffrey Bloss, porter for the event which focused on making investments M.D., senior vice president of scientific and medical affairs, in biomedical research a higher national priority. Estab- Astellas Pharmaceuticals U.S., lead sponsor of the event, lished and led by the American Association for Cancer discussed the importance of collecting, analyzing and dis- Research (AACR), the two-day program featured remarks seminating real-world evidence, and engaging in value- from NIH Director Francis Collins, M.D., Ph.D., and members based decision making. of Congress including Chairman Tom Cole (R-OK), Senator Jerry Moran (R-KS), Senator Dick Durbin (D-IL), Senator MODERN MEDICINE The first panel, moderated by Patty Murray (D-WA), Senator Amy Klobuchar (D-MN) and Richard Harris, science correspondent with NPR, focused on Congressman Brian Higgins (D-NY). In his floor speech to the rapidly changing landscape of modern medicine and dis- Congress, Higgins cited a National Cancer Institute report Strong Majority Agree Basic cussed the relationship between patient advocates, industry, (L to R) Frank Sesno, Director, George Washington University “that identifies research that won’t be conducted unless Science Should be Supported policymakers, and other stakeholders in assuring the devel- School of Media & Public Affairs; Larry Shapiro, M.D., Congress restores its purchasing power with sustained Do you agree or disagree with the following opment of new treatments and technologies. The panel Washington University in St. Louis, Research!America Board annual funding increases over the next decade. We must statement? “Even if it brings no immediate Member; Amy Comstock Rick, J.D., President & CEO, Food benefits, basic scientific research that advances featured Anil Jina, M.D., senior vice president and head of not let that happen.” Research!America president and CEO and Drug Law Institute, Research!America Board Member; the frontiers of knowledge is necessary and global medical affairs at Shire; Gary Gibbons, M.D., director, Stephen Ostroff, M.D., Acting Commissioner, Food and Drug Mary Woolley and board member Dr. Mary Hendrix, Ph.D., should be supported by the federal government.” National Heart, Lung, and Blood Institute, National Institutes Administration; Marc Boutin, J.D., CEO, National Health president and CEO of the Stanley Manne Children’s Council; William Hait, M.D., Ph.D., Global Head, Janssen of Health (NIH); Ron Mobed, chief executive officer, Else- Research & Development, Research!America Board Member Research Institute, spoke at the Rally reception. vier; Sudip S. Parikh, Ph.D., vice president and general 4% manager of health & analytics, Battelle; and Vincent A. For- 11% Strongly 15% Somewhat Disagree lenza, chairman, chief executive officer and president, BD. REGULATORY SCIENCE Regulatory science was the Not Sure Disagree focus of the third panel, moderated by Frank Sesno, direc- PUBLIC HEALTH ISSUES The second panel, moder- tor of the George Washington University School of Media ated by Seema Yasmin, M.D., medical analyst at CNN, and Public Affairs. Panelists included Stephen M. Ostroff, looked at the prevalence of chronic conditions, antimicro- M.D., acting commissioner, Food and Drug Administration 24% Strongly bial resistance, telemedicine, vaccines, emerging public (FDA); Larry J. Shapiro, executive vice chancellor for medi- Agree health issues and challenges of communicating the value cal affairs, Washington University in St. Louis; William Hait, of public health and health services research. The panelists M.D., Ph.D., global head of research & development, Jans- were Richard Kronick, Ph.D., director, Agency for Health- sen Research and Development; Amy Comstock Rick, J.D., care Research and Quality; Anne Schuchat, M.D., principal president and chief executive officer, Food and Drug Law 46% deputy director, Centers for Disease Control and Preven- Institute; and Marc Boutin, J.D., chief executive officer, Somewhat Agree tion; Lucinda L. Maine, Ph.D., RPH, executive vice president National Health Council. Biomarkers, adaptive and CEO, American Association of Colleges of Pharmacy; designs, risk benefit analysis, incorporating the patient Barbara Newhouse, president and CEO, The ALS Associa- perspective, the 21st Century Cures Act and the Senate (L to R) Mary Hendrix, Ph.D., President & Director, Stanley tion; Reed V. Tuckson, M.D., FACP, managing director, Tuck- Innovation Initiative were among the topics of discussion Manne Children’s Research Institute; Senator Dick Durbin Source: A Research!America survey of U.S. adults conducted in son Health Connections, LLC. during the third panel. (D-IL); Mary Woolley, President & CEO, Research!America partnership with Zogby Analytics in January 2015.

8 research!america 2015 annual report the promise of research 9 campaign for cures

C4C is engaging with candidates at events, and asking what candidates would do to support medical and health research. inspiring

scientists uring the 2016 election, Research!America and D partners are encouraging candidates running for during janssen national office to share their views on medical and health research with voters as part of the national voter educa- town hall tion initiative, Campaign for Cures: Vote for Medical Prog- ress! The campaign works to elevate medical progress and policies that support private sector innovation in the Mary Woolley presented recent national conversation. By arming voters with information on the health and economic benefits of medical research, public opinion survey data, the campaign galvanizes research advocates to ensure their voices are prominent on the campaign trail. encouraged scientists to A majority of respondents (86%) say presidential communicate with non-scientists, candidates should participate in a debate to discuss key and underscored the importance George Mason University students promoting Campaign for Cures at a campaign event of partnerships and collaboration Candidates Should Have a Basic Understanding of Science between governments, industry and How important do you think it is that candidates for science-based challenges facing the United States, such academic research sectors. President and Congress have a basic understanding as health care, climate change, energy, education, innova- of the science informing public policy issues? tion and the economy, according to a national public opinion survey commissioned by Research!America and 3% ScienceDebate.org. Not Very 2% Not Important Research!America also partnered in an event to help s a guest speaker for Janssen Pharmaceuticals’ Important At All voters understand the complexity of the federal budget A Town Hall on November 12, Research!America 7% and determine what they consider to be priorities for president and CEO Mary Woolley underscored the impor- Not Sure federal spending. A group of about 100 Iowa voters tance of public-private partnerships to accelerate the pace 28% discussed federal spending and structural reforms to of research and innovation. “Never Settle,” the theme of Somewhat Important the federal budget at an interactive budget exercise on the town hall, not only inspires Janssen’s commitment September 22 at Drake University in Des Moines con- to advancing medical innovation to benefit patients ducted by The Concord Coalition. Mary Woolley, worldwide, but epitomizes the determination of advocates Research!America president and CEO, participated in for research, she said. the program and described the impact of sequestration, During the program, livestreamed for Janssen automatic spending cuts, and policies that hinder private employees worldwide, Woolley presented recent public sector innovation, on achieving medical progress. opinion survey data and explained why it’s necessary for 59% Through continued strategic activities, communica- scientists to communicate with non-scientists to ensure Very Important tions initiatives and partnerships with preeminent voter (L to R) William N. Hait, M.D., Ph.D., Global Head, Janssen research is a priority for the general public and policy- education groups, the campaign will increase public Research & Development; Jill Carton, Ph.D., Director, Biologics makers. In his remarks, Bill Hait, M.D., Ph.D., Janssen’s awareness about the research ecosystem and the role Research; Mary Woolley, President & CEO, Research!America global head of research and development and a of the public and private sector in the discovery, develop- Research!America board member, discussed innovative ment and delivery of lifesaving treatments to patients. ways to approach major health threats such as obesity, Source: A Research!America and ScienceDebate.org survey of U.S. adults conducted in partnership with Zogby Analytics in September 2015 For more information visit, www.campaignforcures.org. Alzheimer’s and other debilitating diseases.

10 research!america 2015 annual report the promise of research 11 public health how fast heroes in the spotlight to cures

n the Monday before Thanksgiving every year, Recognizing public health odernizing the research ecosystem to O Research!America and other health organiza- M accelerate the discovery, development tions urge Americans to recognize public health profes- professionals who work tirelessly and delivery of lifesaving treatments to patients was sionals who work tirelessly to protect us from illness and the focus of a panel discussion titled “How Fast to injury. Public Health Thank You Day (PHTYD), November 23, every day to protect us from disease, Cures?” hosted by POLITICO Pro Health Care Report honored the everyday at the Newseum in Washington, D.C. in October. heroes who are commit- injury and other health threats. Arthur Allen, POLITICO Pro eHealth editor, ted to preventing the moderated the panel that featured: Mary Woolley, spread of disease, president and CEO, Research!America; Mary combating superbugs, for Disease Control and Prevention and Francis Collins, Woolley, president and CEO, Research!America; addressing the obesity M.D., Ph.D., director, National Institutes of Health. Partners Margaret Anderson, executive director, FasterCures; (L to R) Margaret Anderson, executive director, FasterCures; epidemic, and protecting included the American Public Health Association, Ameri- Joel White, executive director, Health IT Now; and Joel White, executive director, Health IT Now; Mary Woolley, us from environmental can Dental Education Association, The University of North Diana Zuckerman, Ph.D., president, National Center president and CEO, Research!America; Diana Zuckerman, hazards and other health Carolina Gillings School of Public Health, American Veter- for Health Research. The panelists discussed the Ph.D., president, National Center for Health Research; and Arthur Allen, POLITICO Pro eHealth editor threats. Research!America inary Medical Association, the Consortium of Universities 21st Century Cures Act approved by the House, and partners highlighted for Global Health, Association of Public Health Laborato- specific provisions such as health IT, funding for the public health themes such ries, Oral Health America, National Alliance for Hispanic Food and Drug Administration and the National Insti- tailor treatments for individual patients, and concerns U.S. Surgeon General as oral health, mental Health, Society for Public Health Education, Emory Uni- tutes of Health, and potential Senate action on the that the bill might loosen FDA standards to determine Vivek Murthy, M.D., M.B.A. health, vaccinations, versity Rollins School of Public Health and Ohio State bill. A smaller package of bills in the Senate was one the safety and efficacy of new drugs and devices. The and milestones in public University’s College of Public Health. of the options raised by the panel. The discussion panel agreed that additional funding for the FDA and health during the month of November. PHTYD received also highlighted the role of precision medicine to NIH was critical to implement provisions in the bill. broad support on social media and other communications channels from the U.S. Surgeon General Vivek Murthy, M.D., M.B.A, Tom Frieden, M.D., MPH, director, Centers encouraging department chairs to lead communicating research advocacy the value of nursing research asic science research department leaders from uni- to the taxpayer, and helping increase federal support for n describing the benefits of nursing research, how ranging from addressing behavioral issues among Bversities across the country gained valuable insights research. Woolley provided an overview of the political I do you frame the message to have substantive school students, educating women about cancer about becoming stronger advocates and communicators landscape for research and discussed ways to develop conversations with non-scientists? Participants at a Johns screenings, and exploring the use of mobile devices from Mary Woolley, president and CEO, Research!America, and strengthen relationships with members of Congress. Hopkins University (JHU) of Nursing science communica- among seniors to improve health outcomes. A landmark and Suzanne Ffolkes, vice president of communication, Ffolkes shared tips on working with the media and crafting tions workshop hosted by Research!America in October nursing research study led by Research!America board during the combined Association of Medical School compelling messages that resonate. Research!America learned about different strategies for communicating the member, Martha Hill, Ph.D., R.N., dean emerita and Neuroscience Department Chairpersons (AMSNDC) and board member Keith Yamamoto, vice chancellor for value of their research with various audiences. professor of nursing at JHU, on reducing high blood Association of Anatomy, Cell Biology and Neurobiology research, University of California, San Francisco, described The workshop, facilitated by Research!America pressure among inner-city African-American men Chairpersons (AACBNC) winter conference in 2014. The new paragons for post-graduate science education. Attend- staff, invited participants to draft elevator pitches describ- was also a topic of discussion. Workshop participants session focused on strategies to engage non-scientists ees discussed their challenges in conducting advocacy and ing their research to learn what messages and informa- agreed about the importance of emphasizing cost (policymakers, media and the public at-large) about the educating non-science audiences. Preliminary plans were tion resonate with policymakers, media, potential funders savings associated with certain interventions in this benefits of medical research, with a goal of heightening made to create science advocacy pilot programs that will and the general public. The pitches focused on projects study to engage non-scientists. the visibility of basic scientists, demonstrating accountability encourage scientists to do more public outreach.

12 research!america 2015 annual report the promise of research 13 media 2015 highlights of 2015 major donors

Visionaries Innovators NewYork-Presbyterian $100,000 + $10,000–$24,999 Hospital Research!America Sudip S. Parikh, Ph.D. We provide messaging and other communications materials Astellas Pharma US, Inc. AcademyHealth Perelman School of Medicine Staff Elsevier American Association for at the University of Mary Woolley to advocates to help build a unified voice for research and to Janssen Pharmaceutical Cancer Research Pennsylvania President and CEO Companies of Johnson & American Association of Hon. John Edward Porter Johnson Colleges of Pharmacy E. Albert Reece, M.D., Ph.D., Barbara Love facilitate their own outreach to news media, elected officials, Merck & Co., Inc. American Heart Association M.B.A. Executive Assistant to the President Raymond and Beverly Sackler Battelle Science Debate, Inc. Fund for the Arts and BD Larry J. Shapiro, M.D. business leaders, colleagues and local communities. Sciences Bristol-Myers Squibb The University of Chicago Administration Broad Institute Pritzker School of Medicine Michael Coburn Champions David Bunning Keith R. Yamamoto, Ph.D. The Dana Foundation Executive Vice President & Chief $50,000-$99,999 Elias and Nadia Zerhouni Operating Officer The Donaghue Foundation Anonymous American Medical Association Genentech, Inc. Aimée Lefever Woolley penned an op-ed in CQ Roll Call calling on William G. Anylan, M.D.* Geoffrey Beene Foundation Director of Operations Burroughs Wellcome Fund Supporters Congress to pass the 21st Century Cures Act. GlaxoSmithKline Michelle Reddersen Celgene Corporation Greater Akron Chamber $500–$1,499 Doris Duke Charitable Controller Hogan Lovells US LLP American Association of Foundation In a letter to the editor published in , The Johns Hopkins University Colleges of Nursing Pfizer Inc in response to an article about 21st Century Cures Act Partners HealthCare System Walter Anderson Communications Shire The Rockefeller University Henry “Chip” Appelbaum provisions, Research!America VP of Policy and Advocacy Suzanne Ffolkes Sanofi Paul Berg, PhD Vice President, Communications Ellie Dehoney wrote in support of funding in the bill to Partners Takeda Pharmaceuticals William R. Brinkley, Ph.D. Jennifer Santisi accelerate medical progress. $25,000–$49,999 U.S.A., Inc. Roger J. Bulger, M.D. UCB, Inc. Hon. Michael N. Castle Senior Manager of Communications AdvaMed (Advanced Medical United Therapeutics Technology Association) Charles C. Gates Center for Anna Briseño Research!America VP of Communications Suzanne Ffolkes Corporation Regenerative Medicine Alzheimer’s Association Communications Manager st UsAgainstAlzheimer’s and Stem Cell Biology urged Congress to give consideration to the 21 Century Amgen Whitehead Institute for Mike Coburn Eric Taylor Amway Cures initiative and other bipartisan proposals to advance Biomedical Research Karen Goraleski Communications Specialist Colgate-Palmolive Co. research in a letter to the editor in The Gainesville Sun. Mary Woolley William N. Hait, M.D., Ph.D. The George Washington esearch!America garnered significant media John G. Hildebrand, Ph.D. University Communications Intern Martha N. Hill, Ph.D., R.N., coverage in 2015, delivering timely interviews and A USA Today insert featured an op-ed about clinical Gilead Sciences, Inc. Advocates R F.A.A.N. Christopher Jones Howard Hughes Medical $1,500–$9,999 insights on key issues related to medical and health research, research penned by Woolley encouraging all research Jackie Lovelace Johnson Institute st Tenley E. Albright, MD Elizabeth Baker Keffer the elections, medical innovation, 21 Century Cures Act, stakeholders to make patient participation in clinical Lilly Development and Membership Alexandria Real Estate Pete Kirkham Milken Family Foundation federal funding for research, Public Health Thank You Day, research a “healthy behavior.” Equities, Inc. Greg Lennon Thayer Surette Milken Institute Hortensia Amaro, PhD Lewis-Burke Associates LLC Director of Development Research!America survey data, the National Health Research Novartis International In a letter to the editor in USA Today, in response to The ALS Association Catherine McDermott Forum and the Advocacy Awards Dinner. Highlights include: PhRMA Ted Brasfield American Cancer Society Michigan State University an article about the need for presidential candidates Prostate Cancer Foundation Manager, Membership Development American Cancer Society College of Human Research!America Board Chair Hon. John Porter and former to have a detailed plan on how they would improve the Society for Neuroscience Cancer Action Network Medicine WebMD Health Corp (ACS CAN) Senator Tom Harkin (D-IA) co-authored an op-ed calling diagnosis, treatment, and prevention of mental illness and Thomas A. Moorehead Policy and Advocacy Susan Whitehead American Chemical Society Oxford Bioscience Partners for an increase of federal funding for the National Institutes addiction, Woolley added that plans should also include The American College of Herbert Pardes, M.D. Ellie Dehoney of Health in The Des Moines Register. a commitment to boosting public support for research. Neuropsychopharmacology Patient Centered Outcomes Vice President, Policy and Advocacy American Public Health Research Institute (PCORI) Caitlin Leach Association Research!America president and CEO Mary Woolley Woolley penned an op-ed in The Huffington Post about William A. Peck, M.D. Director of Policy and Advocacy Association of Clinical Edward E. Penhoet, Ph.D. Research Organizations Rachel Weissman penned an op-ed in the Huffington Post calling on the the lack of detailed policy solutions to advance medical Carol R. Scheman Nancy Brown Policy and Advocacy Associate M. Roy Schwarz, M.D. 114th Congress to fuel the momentum for medical progress. progress from candidates. David Geffen School of John R. Seffrin, Ph.D. Jacqueline Lagoy Medicine at UCLA Gregory Sorensen, M.D. Administrative Assistant, Policy Research!America board member Gregory Sorensen, M.D., Vice President Joe Biden’s comments regarding a “moonshot Susan Dentzer Spectrum Science and Advocacy Joseph M. Feczko, M.D. former CEO, Siemens Healthcare North America and to cure cancer” were highlighted in a Boston Globe Communications Jay A. Gershen, D.D.S., Ph.D. Sally Squires Woolley co-wrote an op-ed in CQ Roll Call calling for the article that included Woolley’s support for the initiative. Mary J. C. Hendrix, Ph.D. Susan G. Komen Burroughs Wellcome Interns Rush D. Holt, Ph.D. repeal of the medical device tax to spur innovation, help Reed V. Tuckson, M.D., Abigail Barry In a Kaiser Health News article about the FY16 Howard University F.A.C.P. patients, and the economy. JDRF Naomi Charalambakis congressional budget proposals to increase funding for University of Colorado System Kevin Fomalont Alan I. Leshner, Ph.D. University of Connecticut In a letter to the editor in The New York Times, Woolley some agencies at the expense of others such as AHRQ, Constance E. Lieber * Brian Smith Health Center Julia Song lamented that cuts to discretionary spending in the proposed Woolley strongly opposed the proposed strategy. Lupus Foundation of America, Wake Forest University Inc. School of Medicine FY16 budgets would dramatically slow medical progress. The article was also featured in NPR and . James L. Madara, M.D. Science Policy Fellows Lucinda L. Maine, Ph.D., R.Ph. *Deceased Woolley discussed the lack of scientists in Congress and Research!America also shared relevant and compelling March of Dimes Foundation Thomas Crockett, Ph.D. Ulli Hain, Ph.D. the potential impact on federal research funding and advocacy messages on social media via Twitter and Hon. Kweisi Mfume National Disease Research Jeffrey Wojton, Ph.D. policies in a Wall Street Journal article. Facebook in coordination with members and supporters. Interchange (NDRI)

14 research!america 2015 annual report 15 Research!America Leadership

Officers

*The Honorable John *The Honorable *Mary Woolley, *E. Albert Reece, M.D., *Lucinda Maine, Ph.D., R.Ph. Edward Porter Michael N. Castle President Ph.D., M.B.A. Treasurer Chair Vice Chair Chief Executive Officer Secretary Executive Vice President & CEO Senior Advisor, Partner, DLA Piper, LLP Research!America Vice President of Medical American Association of Colleges of Pharmacy Hogan Lovells US LLP Governor of Delaware Affairs; The John Z. and United States (1985–1992) Akiko Bowers Distinguish Professor and Dean, Representative United States University of Maryland (1980–2001) Representative (1993–2011) School of Medicine

Board Members Elizabeth Baker Keffer Emeritus Members James E. Mulvihill, D.M.D. Managing Director and Chief Elizabeth G. Nabel, M.D. Tenley E. Albright, M.D. Network Officer BDT Capital Partners Dennis A. Ausiello, M.D. Director, Collaborative Initiatives, Kenneth I. Berns, M.D., Ph.D. William D. Novelli Debra R. Lappin, J.D. Massachusetts Institute of William R. Brinkley, Ph.D. William A. Peck, M.D. Technology Principal, FaegreBD Consulting Roger J. Bulger, M.D. Edward E. Penhoet, Ph.D. Hortensia Amaro, Ph.D. *Alan I. Leshner, Ph.D. G. Steven Burrill William L. Roper, M.D., M.P.H. Chief Executive Officer Emeritus, Associate Vice Provost, Gail H. Cassell, Ph.D. Leon E. Rosenberg, M.D. American Association for the Dean’s Professor of Social Work Isadore Rosenfeld, M.D. and Preventive Medicine, Advancement of Science Wendy Chaite, Esq. University of Southern California Jordan J. Cohen, M.D. Raymond R. Sackler, M.D. James L. Madara, M.D. School of Social Work Charles A. Sanders, M.D. Executive Vice President and Sam Donaldson Mitchel Sayare, Ph.D. Georges C. Benjamin, M.D. Chief Executive Officer Robert K. Dresing Executive Director, American American Medical Association Eugene Garfield,Ph.D. Carol R. Scheman Public Health Association M. Roy Schwarz, M.D. Mark McClellan, M.D., Ph.D., M.P.A. Myron Genel, M.D. Susan C. Scrimshaw, Ph.D. *Nancy Brown Director, Duke-Robert J. Margolis, Irma E. Goertzen Chief Executive Officer MD, Center for Health Policy, M.R.C. Greenwood, Ph.D. John R. Seffrin,Ph.D. American Heart Association Duke University Elmer E. Huerta, M.D., M.P.H. Randolph Siegel Susan Dentzer *Hon. Kweisi Mfume Robert A. Ingram Samuel C. Silverstein, M.D. President and CEO, United States Representative Jackie Lovelace Johnson The Honorable Louis Network for Excellence in (1987–1996) The Honorable Patrick J. W. Sullivan, M.D. Health Innovation *Herbert Pardes, M.D. Kennedy The Honorable Billy Tauzin *Victor J. Dzau, M.D. Executive Vice Chair Caroline A. Kovac, Ph.D. Reed V. Tuckson, M.D. President, National NewYork-Presbyterian Hospital Philip R. Lee, M.D. Christopher A. Viehbacher Academy of Medicine *Sudip S. Parikh, Ph.D. Ellen Levine M. Cass Wheeler Joseph M. Feczko, M.D. Vice President & General Manager John P. Margaritis John Whitehead Health & Analytics, Battelle Jewell Jackson McCabe Ruth A. Wooden *Jay A. Gershen, D.D.S., Ph.D. Catherine E. McDermott Judy Woodruff President, Northeast Ohio *Amy Comstock Rick, J.D. Medical University President and CEO Donnica L. Moore, M.D. James B. Wyngaarden, M.D. Food and Drug Law Institute *William N. Hait, M.D., Ph.D. *Larry J. Shapiro, M.D. Global Head, Janssen In Remembrance Research & Development, LLC Spencer T. and Ann W. Olin Distinguished Professor; William G. Anlyan, M.D., Chancellor Emeritus of Duke University, was Larry Hausner, M.B.A. Executive Vice Chancellor a founding member of the Research!America board, serving from 1989 President, ConStrat for Medical Affairs and Dean to 2002. Dr. Anlyan chaired the Board from 1992 to 1996, and continued Emeritus, School of Medicine as an active emeritus director until his death. Mary J.C. Hendrix, Ph.D. Washington University in St. Louis President, Shepherd University Constance Lieber served as a member of Research!America’s board Laing Rogers Sisto Martha N. Hill, Ph.D., from 1994 to 2003. She received the Exceptional Contributions as a Community Leader Volunteer Advocate for Medical or Other Health-Related Research R.N., F.A.A.N. Award in 2002 for her advocacy for mental health research, and as Dean Emerita; Professor of Gregory Sorensen, M.D. the founder of The Lieber Institute for Brain Development. Nursing, Medicine and Public Executive Chairman, IMRIS Health, The Johns Hopkins former distinguished leader at NIH, served *Keith R. Yamamoto, Ph.D. John F. Sherman, Ph.D., University School of Nursing Professor; Vice Chancellor for as senior advisor to the Research!America Executive Committee and the Board of Directors from 1994 to 2004. Rush D. Holt, Ph.D. Science Policy and Strategy; Vice Chief Executive Officer American Dean for Research, School of Hon. Louis Stokes, Esq., former Congressman and civil rights advocate, Association for the Advancement Medicine, University of California, served on Research!America’s Board of Directors from 2007 to 2010, of Science, United States San Francisco and was active until his death as an emeritus board member. Representative (1999–2015) Elias A. Zerhouni, M.D. Alan Walton, Ph.D., celebrated biotech leader, served on the Harry Johns President, Global Research & Research!America Board of Directors from 1999 to 2005, and as an President and CEO Development, Sanofi; Former advisor to the CEO until his death. Alzheimer’s Association Director, National Institutes of Health, 2002–2008 Jack Watters, M.D., Vice President for External Medical Affairs, Pfizer, Evan Jones was elected to Research!America’s board from 2010 until the time of Managing Member, jVen Capital *Executive Committee Member his death. He was dedicated to the health of people worldwide.

the promise of research 16 DESIGN: MARTY ITTNER DESIGN: MARTY Research!America 1101 King Street, Suite 520 Alexandria, VA 22314 P 703-739-2577 F 703-739-2372 www.researchamerica.org