ResearchAmerica and You: Advocacy for Clinical Research

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Research!America and You Advocacy for Clinical
Research Mary Woolley President,
Research!America March 16, 2006 Association
of Clinical Research Program Training Directors
Meeting Bethesda, MD
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17 Years of Putting Research on the Public Agenda
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Mission
Make medical and health research, including
research to prevent disease, disability and
injury a much higher national priority
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Nonprofit alliance with 500 members including

• Academia, hospitals, independent
• research institutions
• Professional and science societies
• Business and industry
• Voluntary health organizations
• Trade associations
• Foundations and philanthropies
• State and local organizations

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Distinguished Board Includes

• Former members of Congress and top
  Administration officials
• Leaders of academic and industry research
• Leaders of voluntary health organizations
• Major media personalities
• Venture capitalists
• Top advertising and public relations executives

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Research!Americas Goals

• Ensure that the public hears about research and
  its benefits
• Achieve more funding for medical and health
  research
• Advocate a policy climate that stimulates rather
  than impedes research
• Empower others to advocate for medical and health
  research

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Messages That Work

• Aspirational messages (ThenNowImagine)
• Global competitiveness messages
• Economic impact messages
• Cost savings messages

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Heart Disease

• Then Heart disease killed quickly and without
  warning.
• Now Deaths from heart disease have dropped by
  60 and is no longer the number one killer of
  Americans under the age of 85.
• Imagine Eliminating preventable deaths due to
  heart disease

Source NHLBI/NIH (1998, 2002).
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HIV/AIDS

• Then In the early 90s, one in four HIV-infected
  mothers passed the infection on to their babies.
• Now With treatment with antiretroviral drugs,
  the mother-to-child transmission rate has dropped
  dramatically in the U.S.
• And, more affordable drug regimens are being
  tested to help those in developing countries
• Imagine A world where every child of an
  HIV-infected mother had the chance to be born
  healthy.

Sources NIAID/NIH 1998, 2003. OAR/NIH 2001.
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Global Competitiveness Whats at Stake?

• The scientific and technical building blocks of
  our economic leadership are eroding when many
  other nations are gathering strength.
• The abruptness with which our nations lead can
  be lost and the difficulty in recovering a lead
  once lost requires us to prepare with great
  urgency to preserve our economic security.

Source - Rising Above The Gathering Storm
Energizing and Employing America for a Brighter
Economic Future (2005) The National Academies
Press
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Economic Impact Messages

• Research drives innovation and productivity
• Research creates jobs
• Research fuels local regional economies

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Cost Saving Messages

• Treatments that delay the onset and progression
  of Alzheimers disease by five years could save
  50 billion a year in health care costs.
• NIH-funded researchers have developed treatments
  that delay or prevent diabetic retinopathy,
  saving the U.S. 1.6 billion a year.
• At least 60 of the U.S. population on public
  water systems has received fluoridated water
  since 1990, translating to savings in dental
  treatment costs of over 25.7 billion in the past
  decade 

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by understanding risk factors and intervening
to modify them early, we can reduce the incidence
of disease which currently presents itself at a
late stage when its cost to society and
individuals is higher than it should be.
Elias A. Zerhouni, MD, Director, National
Institutes of Health as noted by NIA director
Richard Hoses, MD in Research Policy
Alert 3/10/06
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(No Transcript)
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We CAN afford medical and health research!
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Dollars Sense

• Online sales rose to 172.4 billion in 2005.
• That amount would fund the National Institutes of
  Health for 6 years!

Sources The State of Retailing Online 8.0,
Forrester Research NIH
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About six cents of every health dollar in the
U.S. is spent on medical and health research.
Source 2002 Investment in U.S. Health
Research, Issue Paper compiled by Emily Thompson
and Stacie Propst, PhD, for Research!America,
2004.
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Research!America Polls
Commissioning public opinion polls on research
issues for 14 years

• National Polls
• State-Based Polls
• Issue-Specific Polls

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Medical researchers and funders of
health-related research, should be well informed
as to the publics perceptions and attitudes
concerning research The understanding, support,
and engagement of the public are essential if the
research enterprise is to continue to succeed.
To ensure success, stakeholders in research must
commit to listening to the public and being
responsive to their concerns.
Source M. Woolley S. Propst, Public
Attitudes and Perceptions About Health-Related
Research, JAMA, September 21, 2005Vol 294, No. 11
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Polls
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
citizenryinformation necessary to make informed
decisions where the publics welfare is
concerned.
Sen. Arlen Specter (R-PA)
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Typical Survey Methodology

• 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).

• Online polls are conducted with a sample size of
  1000-2000 adults and sampling error of /-3.1
  percent. The data is weighted in two stages to
  ensure accurate representation of the U.S. adult
  population.

• Figures for age, sex, race, education, and income
  is weighted where necessary to bring them into
  line with population demographics.
• Propensity score weighting is also used to
  adjust for respondents propensity to be online.

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U.S. Should Be World Leader in Medical and Health
Research
How important do you think it is that the U.S.
maintains its role as a world leader in medical
and health research?
Source National Survey, 2005 Charlton Research
Company for Research!America
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Important to Eliminate Health Disparities
Studies show that certain health problems such as
diabetes, heart disease and infant mortality
happen more often among people with lower incomes
and among minorities. How important do you feel
it is to conduct medical or health research to
understand and eliminate these differences?
Source Aggregate 2004
Harris Interactive for Research!America
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Americans See Value in Preventing Disease
Which do you think is more valuable, research on
how to prevent disease or research on how to cure
and treat disease?
Source National Survey, 2005 Charlton Research
Company for Research!America
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Americans Want Increased Funding
Some people say Current U.S. funding for
medical and health research is sufficient and
other budget items are higher priorities
now. Other people say Increasing U.S. funding
for medical and health research now is essential
to our future health and economic prosperity.
Which of these statements more closely reflects
your opinion?
Source National Survey, 2006
Charlton Research Company for
Research!America
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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 Survey, 2006 Charlton Research
Company for Research!America
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Influencing How Government Medical Research
Funds Are Spent
Which of the following do you feel should have
the most influence on how government medical
research funds are spent? Would it be...
Source National Survey, 2006
Charlton Research Company for
Research!America
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Very Important for U.S. to Educate and Train
Researchers
How important is it for the U.S. to educate and
train individuals qualified to conduct medical
and health research?
Source National Survey, 2005 Charlton Research
Company for Research!America
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Americans Believe Health Care Is Based On Research
Do you believe that the health care services you
receive are based on the best and most recent
research available?
Source National Survey, 2005 Charlton Research
Company for Research!America
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We pay for and receive excellent care one third
of the time, unnecessary care one third of the
time, and one third of the time our care is
characterized by mistakes, errors or under-use of
clinically appropriate treatments.
Carolyn Clancy, MD Director of Agency for
Healthcare Research and Quality
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Americans Think Investment in Research Important
for Health Care
How important do you think it is that we invest
in more research to assure that there is a solid
scientific base for healthcare?
Source National Survey, 2005 Charlton Research
Company for Research!America
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Americans Think Research Institutions Should Work
Together
Do you think the institutions conducting medical
research in this country, such as government,
universities and the pharmaceutical industry,
should work together to develop new treatments
and cures?
Source National Survey, 2005
Charlton Research Company for
Research!America
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Investment in Research Pays Off
Do you agree or disagree that in the long run,
the money invested in medical and health research
pays off?
Source National Survey, 2005 Charlton Research
Company for Research!America
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Public Doesnt Know Where Research is Conducted
Do you know of any institutions, companies, or
organizations in your area where medical research
is conducted? (percentage saying dont know)
Alabama 37 Colorado 56 Florida 58 Illinois
50 Massachusetts 40 Mississippi 59 New
Hampshire 62 North Dakota 58 South
Dakota 73 Texas 57
Source Research!America Polls 1998-2004 Charlton
Research Company for Research!America
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Most Do Not Recognize NIH
What is the name of the government agency that
funds most of the medical research paid for by
taxpayers in this country?
Source National Survey, 2005 Charlton Research
Company for Research!America
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Public Concerns About Research
What concerns, if any, do you have about medical
and health research?
First mentions No concerns/dont
know 36 Wasting money 9 Government
involvement 6 Profit driven 5 Not enough
funding 5 Finding a cure for diseases 4 Researc
h is needed 4 Finding a cure to cancer 3 Stem
cells 3 It takes too long 3 Other 22
Source National Survey, 2006 Charlton Research
Company for Research!America
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Clinical Research is Valuable
How do you perceive the value of clinical
research? (In clinical research, volunteers
choose to participate to test the effectiveness
of certain treatments, drugs or devices in
improving the care of patients and understanding
and preventing disease.)
Source National Survey, 2006 Charlton Research
Company for Research!America
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Few Participate in Clinical Research
Have you ever participated in a clinical research
study?
Source National Survey, 2006 Charlton Research
Company for Research!America
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Majority of Americans Would Participate in
Clinical Research
How likely would you be to participate in a
clinical research study?
Source National Survey, 2006 Charlton Research
Company for Research!America
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Factors Affecting Participation in Clinical
Research
How important would each of the following factors
be in your decision to participate as a volunteer
in a clinical research study?
Source National Survey, 2006 Charlton Research
Company for Research!America
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Few Doctors Suggest Participation
Has your doctor ever suggested that you
participate in a clinical research study?
Source National Survey, 2006 Charlton Research
Company for Research!America
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Good News

• Thanks to medical and scientific research,
  Americans are living longer, healthier lives.
• Americans have an appetite for more information
  on research.
• Americans trust scientists.
• AND
• Americans want research to succeed!

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Good News (contd.)

• Americans believe
• Medical, health and scientific research are
  important to the U.S. economy.
• it is important to conduct research in their
  state.
• it is important to eliminate health disparities.
• commitment to research should be higher as a
  means to manage health care costs.

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Bad News

• Americans are unable to identify where research
  is conducted.
• Americans dont know their elected
  representatives positions on medical, health and
  scientific research.
• Only six cents of every health care dollar in the
  U.S. is spent on medical and health research.
• Healthcare costs continue to escalate.

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Bad News (contd.)

• In December, Congress cut federal funding for
  research for first time in 30 years
• Presidents 2007 budget calls for flat-lining NIH
• Increasing intrusion of ideology into science
  decision-making.
• Fewer champions for science among elected
  officials.

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Research Funding

• Then threatened cuts followed by doubling the
  NIH budget between 1999-2003.
• Now research funding cuts for 2006 and beyond.
• Imagine sustained support for RD at the level
  of scientific opportunity.

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What Can You Do?

• Put a human face on research Yours!
• Use public opinion poll data to make the case
  for research as a high priority
• Contribute to the election of a Research
  Champion running for office
• Attend a town meeting and speak out
• Dont leave advocacy to others
• Support colleagues who are advocates
• Help create an atmosphere/culture of public
  engagement

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Too many voters have not made the connection
between science and prosperity. Scientists need
to tell the story. Its a good story. It has to
be told and it has to be sold. Tell the story
with data, tell it with anecdotes and tell it
often.
Neal Lane, PhD Former White House Science
Advisor
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You can change the image of things to come. But
you cant do it sitting on your handsThe science
community should reach out to Congress and build
bridges.
The Honorable John Edward Porter,Chair,
Research!America, at the AAAS/Research!America
post-election forum on December 1, 2004.
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Advocate Locally

John Boehner (R-8th)

• Use state economic statistics and state poll data
• Personalize research
• Engage local media
• Engage local community leaders

West Chester, OH
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Update Your Elevator Speech
What Can You Do?

• Choose language carefully
• Prepare your messages in advance
• Practice saying messages aloud

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• What you understand well can be communicated
  well. It's a matter of not just discipline but
  obligation to the public for scientists to
  communicate both the excitement of science, the
  prospects of science and the accomplishments of
  science.
• Elias A. Zerhouni, MD,
• Director, National Institutes of Health

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(No Transcript)
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Establish and Maintain Dialogue with Responsible
Critics
What Can You Do?

• Attend town meetings on a regular basis
• Engage via the media

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What Can You Do?
Build a Relationship With the Media

• Return calls promptly
• Know and respect deadlines
• Turn facts into a story
• Be able to translate scientific language into
  everyday terms
• Be concise
• Have a local example
• Become a resource
• Correct errors, politely

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March 12, 2006
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What Can You Do?
Develop alliances with voluntary health
organizations ask how you can help
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What Can You Do?
Identify ways to value public engagement

• model public engagement
• expect public engagement
• recognize reward public engagement
• train others in effective public engagement

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Pass the Starbucks Test!
What Can You Do?

• Make it impossible to ignore research
• Make it impossible to say
• -Ive never heard of NIH
• -I cant name a research institution
• -I cant name a researcher
• Imagine making better health and quality of life
  possible through research

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Conclusion

• Todays environment demands Audacious Advocacy
  for research!
• assuring that research is an all-American
  priority
• rejecting the suggestion that we should lower our
  expectations
• making the economic case for research
• building new champions for research
• remembering Tip ONeills adage
• all politics is local.

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You cant abdicate or transfer to advocates your
individual responsibilities as scientists and
citizens of this great country and our world at
large. You as an individual, scientist and
citizen your voice, your effort, your
participation are essential and vitally needed
to influence positively the public policies
affecting science.
Hon. John Edward Porter, at the Winter
Conference on Brain Research January 25, 2004
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