Where Do We Go From Here? Advocacy for Research After the Election


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Research!America President Mary Woolley's presentation at the Association of University Centers on Disabilities' Annual Meeting, "Where Do We Go From Here? Advocacy for Research After the Election," November 10, 2008.

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  • 15. Do you agree or disagree that mental health services should be part of all health care plans in the public and private sectors? Agree Candidate's Comments I am a long‐time supporter of mental health parity. I helped pass the Illinois mental health parity law. And my national public health plan will include coverage of all essential medical services, including preventive, maternity and mental health care. I strongly support mental health fairness and parity of mental health coverage in all federal health programs. I cosponsored the Mental Health Parity Act of 2007 and I am a supporter of the bipartisan Paul Wellstone Mental Health and Addiction Equity Act of 2007. Similarly, I believe in prohibiting group health plans from imposing treatment or financial limitations on mental health and substance‐related disorder benefits that are different from those applied to medical or surgical services. I am also committed to ensuring that Americans with disabilities or mental illness receive Medicaid and Medicare benefits in a low‐cost, effective and timely manner.
  • I strongly support increasing funding for the NIH. Even though biomedical research costs are increasing each year, annual funding for the National Institutes of Health (NIH) has not kept up. This isn't just counter-productive, it is a failure to keep faith with so many Americans who are in the fight of their lives against cancer and other diseases, and it overlooks our country's tradition of medical innovation.
  • Autism Speaks is a Research!America member Coleman Institute for Cognitive Disabilities at the University of Colorado System is a member Association of University Centers on Disabilities is a new member
  • “ don’t be afraid to talk about money, even in the current climate”
  • Telephone (random-digit dialing) polls are conducted with a sample size of 800-1000 adults (age 18+) and a maximum theoretical sampling error of +/- 3.5 percent. Data are demographically representative of adult U.S. residents (state or national).
  • We hear this statement, or similar ones, ALL THE TIME, not just from members hailing from Idaho. More voters are members of VHAs than are drawn from the science community – although when you consider all the employees and vendors of science-based IRIs, universities, pharma and bio, etc., the numbers add up --
  • Started in 2005 as a way to thank public health workers for all they do to keep our society running. 870 people have signed up to use our public health toolkit (started as part of the RWJF grant – transitioned to be mostly providing PHTD items) – the toolkit provides electronic copies of the PHTD ads (and public health related ads created with RWJF) for print and use online, sample LTEs and op-eds, and contact information for public health heroes. In 2007, more than 300 e-mail messages were sent to public health heroes via the Research!America website. In 2008, launching a Facebook group to spread the thanks to those people on Facebook who are passionate about public health (there are more than 500 Facebook groups that are related to public health!)
  • Where Do We Go From Here? Advocacy for Research After the Election

    1. 1. Where Do We Go From Here? Advocacy for Research After the Election Mary Woolley, President, Research!America Association of University Centers on Disabilities Annual Meeting November 10, 2008, Washington, DC
    2. 2. <ul><li>Never forget that research changes the history of health and well-being. Because you conduct research on behalf of the intellectually disabled, you understand advocacy. </li></ul><ul><li>Now is your time to make history! </li></ul>Making History
    3. 3. “ I am a long‐time supporter of mental health parity. … I strongly support mental health fairness and parity of mental health coverage in all federal health programs.” – President-Elect Barack Obama, in his response to the 2008 Your Candidates-Your Health voter education initiative
    4. 4. “ I believe that the U.S. has the potential to lose its global competitive edge in science, technology and innovation unless we take steps to change the current trend. …I strongly support increasing funding for the NIH.” – President-Elect Barack Obama, Your Candidates-Your Health response
    5. 5. <ul><li>Candidate Outreach </li></ul><ul><ul><li>All presidential and Congressional candidates were invited to respond to a questionnaire based on suggestions made by readers of PARADE magazine </li></ul></ul><ul><ul><li>Extensive public outreach through our advocacy network and almost 50 sponsoring partners to encourage candidates to respond </li></ul></ul>Your Candidates-Your Health 2008 www.yourcandidatesyourhealth.org
    6. 6. Your Candidates-Your Health Partners
    7. 7. For Barack Obama 2008, Tim Westmoreland, JD For John McCain 2008, Ike Brannon, PhD The New York Times’ David Leonhardt moderated the event Research!America’s Presidential Health & Economic Policy Discussion Westmoreland: Obama will double research funding within10 years.
    8. 8. Research!America: 19 Years of Putting Research on the Public Agenda <ul><li>Non-profit alliance with 500 member organizations drawn from academia, business, patient organizations and scientific societies representing more than 125 million Americans </li></ul><ul><li>Distinguished, all-volunteer board includes former elected and appointed officials, media and public relations leaders, and leaders from alliance member organizations </li></ul>
    9. 9. Research!America’s Mission <ul><li>Make medical and health research, including research to prevent disease, disability and injury, a much higher national priority </li></ul>
    10. 10. Research!America Goals: <ul><li>Ensure that the public hears about research and its benefits </li></ul><ul><li>Achieve more funding for medical and health research </li></ul><ul><li>Advocate a policy climate that stimulates rather than impedes research </li></ul><ul><li>Empower others to advocate for medical and health research </li></ul>
    11. 11. 2009 Research Budget Update Continuing Resolution (CR) in effect until March 6, 2009, keeping funding at FY08 levels Potential for $1.9 billion for NIH in new economic stimulus package
    12. 12. Snapshot of Current Advocacy Environment <ul><li>ECONOMIC DOWNTURN </li></ul><ul><li>Public expectations are very high for new President/Congress re: health care reform </li></ul><ul><li>Pent up demand for other under-funded priorities, incl. infrastructure and education </li></ul><ul><li>18 month window, then re-election focus </li></ul><ul><li>Researchers resist becoming advocates </li></ul>
    13. 13. Overarching Messages in this Environment <ul><li>Research is a solution </li></ul><ul><li>Scientific innovation fuels economic growth, both short and long term, even as it can help heal the broken aspects of our health care system, making it more cost-effective. </li></ul>
    14. 14. Overarching Messages in this Environment <ul><li>Research helps diminish the costly human toll of disease and disability </li></ul><ul><li>It’s time to reestablish the value of science advice and science advisers in public policy making </li></ul>
    15. 15. Research!America Provides Tools You Can Use In this Environment <ul><li>Economic Impact Reports </li></ul><ul><li>U.S. Investment in Health R&D </li></ul><ul><li>Fact Sheets </li></ul><ul><li>Public Opinion Poll Data </li></ul><ul><li>Advocacy Training and Communications Workshops </li></ul><ul><li>Your Congress-Your Health </li></ul>
    16. 16. Tools You Can Use: State Economic Impact Data www.researchamerica.org/state_econ Profiles of each state Highlights from local economic impact studies Evidence that research creates good jobs
    17. 17. Tools You Can Use: Research Funding by State www.researchamerica.org/state_funding
    18. 18. Tools You Can Use: U.S. Investment in Health R&D Source: Research!America, Investment in U.S. Health Research 2001, 2002, 2004, 2005, 2006, 2007 Tracking Spending by Sector
    19. 19. Research Takes Cents <ul><li>Americans spent more than $17 billion on video games, hardware in 2007 </li></ul><ul><li>That could fund the Eunice Kennedy Shriver National Institute of Child Health and Human Development at current levels for more than 14 years! </li></ul>Sources: NPD Group, 2008; NIHFY08
    20. 20. Tools You Can Use: Fact Sheets
    21. 21. Tools You Can Use: Research!America Poll Data: <ul><li>Commissioning public opinion polls on research issues for more than 16 years: </li></ul><ul><ul><ul><li>National Polls </li></ul></ul></ul><ul><ul><ul><li>State-Based Polls </li></ul></ul></ul><ul><ul><ul><li>Issue-Specific Polls </li></ul></ul></ul>
    22. 22. “… public sentiment is everything. With public sentiment, nothing can fail; without it nothing can succeed.” – Abraham Lincoln
    23. 23. “ As a member of the U.S. Senate, it is incumbent upon me to hear the public voice about important issues. Research!America, through its national surveys, gives me added evidence of the importance of medical and health research to our citizenry.” –Sen. Arlen Specter (R-PA), Ranking Member, LHHS Subcommittee
    24. 24. Most Important Long-Term Challenges Facing Our Nation Source: National Survey, 2008 Harris Interactive for Research!America and ScienceDebate2008.com In your opinion, which of the following, if any, are the most serious long-term issues facing the country?
    25. 25. U.S. Does Not Have Best Health Care System Do you believe that the United States has the best health care system in the world? Source: National Poll, 2008, fielded September 24-29 Charlton Research Company for Research!America
    26. 26. Research Is A Solution to Rising Health Care Costs When it comes to rising health care costs, would you say research to improve health is part of the problem or part of the solution? Source: National Poll, 2008, fielded September 24-29 Charlton Research Company for Research!America
    27. 27. Americans Say Not Enough Spent on Research In 2007, the U.S. spent 5 and a half cents of each health dollar on research to prevent, cure and treat disease and disability. Do you think that is too much, the right amount, or not enough? Source: National Poll, 2008, fielded September 24-29 Charlton Research Company for Research!America
    28. 28. Americans Willing to Pay More for Medical Research Would you be willing to pay $1 per week more in taxes if you were certain that all the money would be spent for additional medical research, or not? Source: National Poll, 2008, fielded September 24-29 Charlton Research Company for Research!America
    29. 29. Americans Rank Scientist as Prestigious Occupation Source: Bridging the Sciences Survey, 2006 Charlton Research Company for Research!America I am going to read off a number of different occupations. For each, would you tell me if you feel it is an occupation of very great prestige, considerable prestige, some prestige or hardly any prestige at all? {percent saying “very great prestige”}
    30. 30. Most Americans Can’t Name a Living Scientist Source: Bridging the Sciences Survey, 2006 Charlton Research Company for Research!America Can you give me the name of a living scientist?
    31. 31. “ The people we really listen to are the voters. Not once have I heard anyone at a public meeting ask me, ‘what are you doing for medical research?’ Not even from a researcher!” – Rep. Mike Simpson (ID), Appropriations Committee Member
    32. 32. Tools You Can Use: Research!America Advocacy Training for Researchers <ul><li>Underscoring the power of public support </li></ul><ul><li>Clarifying the distinction between advocacy and lobbying </li></ul><ul><li>Sharing effective messages and techniques </li></ul><ul><li>Fundamentals of building relationships with policymakers </li></ul>
    33. 33. Tools You Can Use: Research!America Advocacy Training for Researchers <ul><li>Fundamentals of building relationships with the media </li></ul><ul><li>Reinforcing the power of saying thank you </li></ul><ul><li>Encouraging persistence—it pays off </li></ul>
    34. 34. What Do Researchers, the Media and Public Policymakers Have in Common? <ul><li>Serving the public’s interest </li></ul>
    35. 35. <ul><li>“ I work for you.” </li></ul>
    36. 36. What Can You Do? <ul><li>Make it impossible to ignore research </li></ul><ul><li>Make it impossible to be an elected official without working to help solve the nation’s problems by putting research to work </li></ul><ul><li>Position AUCD for impact </li></ul>
    37. 37. When talking to the public, decision-makers, and the media, frame your message with impact: <ul><li>Medical and health research solves problems – it saves lives, improves quality of life, helps drive the economy and helps reduce health care costs </li></ul>
    38. 38. Prematurity THEN… deaths of newborns from respiratory distress syndrome totaled more than 10,000 a year in the 1950s NOW… with artificial lung surfactant, deaths of premature newborns from RDS have de-creased to less than 1,000 in 2002 IMAGINE… preventing pre-mature births completely
    39. 39. Intellectual Disabilities THEN… giving aspirin to children was typical. NOW… thanks to research, we know children who take aspirin can develop Reye’s syndrome, which may cause brain damage. IMAGINE… what other intellectual disability-causing conditions and diseases could be prevented with more research.
    40. 40. Purposeful Communication to Elected Officials <ul><li>Now more than ever, we need to be smart about spending the public’s money. </li></ul><ul><li>If we put research to work, we can do a better job helping the intellectually disabled live their best life and contribute to society. </li></ul><ul><li>What are we waiting for? </li></ul>
    41. 41. Purposeful Communication to Elected Officials <ul><li>Connect your work to enduring American values: Research seeks new possibilities; translates hope to help; research seeks answers and solutions. </li></ul><ul><li>“ My research is part of the solution to keeping health costs down and enabling more Americans to contribute to society.” </li></ul>
    42. 42. <ul><li>Outreach to Members of Congress All 540 members of Congress will be invited to participate </li></ul><ul><li>Extensive public outreach through our advocacy network and sponsoring partners’ networks to encourage responses </li></ul>Tools You Can Use: Your Congress-Your Health 2009 www.yourcongressyourhealth.org
    43. 44. Lead the Movement to Make Advocacy Part of the Research Training Curriculum Principles of Clinical and Translational Science , David Robertson and Gordon H. Williams, Editors. Elsevier, 2008. New Chapter: Clinical Research in the Public Eye By Mary Woolley
    44. 45. What You Can Do NOW “ So, what can each of us do in the next few months to substantially increase the prob-ability that we will have elected officials who will make research a very high priority? I'm talking about much more than … paying your dues to a professional society or making a contribution to a voluntary health association.” The Honorable John Edward Porter Research!America Chair, in Science magazine, September 26, 2008
    45. 46. What You Can Do NOW <ul><li>Tell your story – to the Congress; to the media; to your family, friends and neighbors. Enlist them as fellow advocates! </li></ul><ul><li>Invite your member of Congress and Senators and their staffs to visit your lab/clinic. </li></ul>
    46. 47. What You Can Do NOW <ul><li>Use, and spread the word about, www.yourcongressyourhealth.org </li></ul><ul><li>Work with Research!America:: </li></ul><ul><ul><li>new fact sheets (vaccines, autism, intellectual disabilities…) </li></ul></ul><ul><ul><li>join our advocacy network </li></ul></ul><ul><ul><li>visit our Web site/Facebook page/blog </li></ul></ul><ul><ul><li>become a member of our alliance </li></ul></ul>
    47. 48. As Thanksgiving approaches, Research!America and the leading U.S. public health organizations ask Americans to give special thanks to their state and local “public health heroes” who protect the nation’s health throughout the year. www.publichealththankyouday.org
    48. 49. “ The audacity of hope! In the end, that is God’s greatest gift to us, the bedrock of this nation; the belief in things not seen; the belief that there are better days ahead.” Senator Barack Obama (IL), speaking at the 2004 Democratic Convention, July 27, 2004.
    49. 50. www.researchamerica.org