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From Research Through Delivery of Care: The Imperative for Advocacy Internal Medicine Grand Rounds
Sponsored byGlobal Health Pathway, Department of Medicine
Division of Global Pediatrics Center for Global Health and Social Responsibility
University of Minnesota - February 27, 2014 Karen A. Goraleski
Executive Director, ASTMH
Disclosure Information Karen A. Goraleski Internal Medicine Grand Rounds
I have no financial relationships to disclose.
I will not discuss off-label use and/or investigational use in my presentation.
• Congress is gridlocked
• House Appropriations Committeehasn’t appropriated any money since 2011
(instead Continuing Resolutions)
• Open seats on House Appropriations Committee for several months until December — previously one of most sought after committee assignments
Washington, DC
Jan 17, 2014 Omnibus Appropriations Bill Signed into Law• Continued funding for all agencies through Sept 30,
2014• NIH:
o $1 billion increase over FY 2013 post-sequestration level
o BUT – this is a cut overall from FY 2013 pre-sequestration
o Since FY 2010 NIH funding mostly stagnant or seen very slight increases
Young Scientists At Risk
• In 1982, scientists under age 36 comprised 18% of all NIH primary investigators
• By 2011, scientists under age 36 comprised 3% of all NIH primary investigators
Source: Society for Neuroscience
Jan 17, 2014 Omnibus Appropriations Bill Signed into Law: CDC • Mixed results
• $567 million increase over FY 2013 post-sequestration level
• FY 2014 total agency funding appears much higher due to inclusion of funding for Prevention and Public Health Fund
• Since 2004 - Division of Parasitic Diseases and Malaria has had same funding in terms of Congressionally appropriated funds
ASTMH statement: “The government’s one-size-fits-all travel policy...is a detriment to our nation’s scientific enterprise and will result in slow scientific innovation and a negative economic impact on the United States and the world."
US Senate Committee on Homeland Security and Governmental Affairs
Senate Hearing: Examining Conference and Travel Spending Across the Federal Government (January 14, 2014)
Chairman - Sen. Tom Carper (DE)Ranking member – Sen. Tom Coburn (OK)
Federal Travel Cuts to Conferences
Sequestration - Budget Enforcement Mechanism • Draconian measure put in place by the
2012 bi-partisan Super Committee • Was never meant to happen • Budget Control Act placed budget caps
for discretionary funding for next 10 years (beginning in 2013)
• Recent budget deal reconfigured the cap for FY14 and FY15 – coming in under the cap, thus no additional cut
Sequestration’s Toll2013
• NIH funded fewer new grants in FY13• Science community furloughed and laid-off • Patients were denied access to clinical
trialsLonger-term • Uncertainty • Young scientists leaving the field• Scientists relocating out of the U.S.• ASTMH: young scientists looking for other
career options Source: NIH; “Unlimited Potential, Vanishing Opportunity” (ASBMB)
2013 Nobel Prize: Physiology or Medicine
“Winning made me reflect on how my original proposal might have fared in today’s depressed funding climate. It would have been much, much more difficult to get support.”
~Randy W. Schekman, PhD 1978 - first major grant was NIH
2013 Nobel Prize: Physiology or Medicine
“Would I have been able to have the initiative, to take the risk?I really am very concerned I would not have been.”
~James E. Rothman, PhD
• Flat Funding
• Sequester
• Federal Travel Cuts to Participate in Scientific Conferences
The Anti-Innovation Business Plan
The Public: Our Partner in Innovation
What Can Fuel Public Confusion?
May 17, 2012
Oct 27, 2011
May 16, 2012
Can drinking too much coffee kill you?
A new study reports that excessive coffee – four cups a day – is harmful, but only to those under 55. How likely is this?
Public is understandably confused by the three steps forward/two steps back dynamic process of science.How do you address this?
“This is science in real time.”
Medical/Science community has a responsibility to help clarify – with the media and the public If not you, then who?
Result: Frustration with Conflicting Reports
Confusion About “Tropical” Medicine • Those diseases are far away - we will never have them
here• “Tropical” – Phew! … that’s not us! • Hygiene - huh? • Lack of fundamental knowledge about disease and
transmission• NOT top of mind for most everyone but you: 24 hours
to anywhere in the world; Peace Corps and military in parts of the world with endemic tropical disease; international commerce – eg, shipping containers, old tires – ripe breeding grounds
• Endemic, Pandemic, Epidemic
• Surveillance• “Tropical medicine” vs
“global health” • Phase I, II, III • Microscopist
• Basic science, bench science
• Vector• NIH, Extramural,
Intramural• Genetic/Genomic• Low-income settings
Language of Science is Jargon to Non-Scientists (just about everyone
else)
• Clinical research
Prep Pointers
• Know your audience
• Your goal is: improved understanding of what
you do and why you do it
• Why should your audience care about what you
are saying? How does it connect to them?
• Tell your story, not your data
Prep Pointer
• Be safe – Avoid all acronyms
Headline:
“Case Western Center for Global Health and Diseases' growth adds jobs in Cleveland, as researchers work to eradicate illnesses worldwide”
Aug 29, 2013
The Media Can be Instructive: Case In Point - Cleveland Plain Dealer
“…to find an effective, simple way to eliminate a widespread, mosquito-borne illness.”
“…bolster the researchers' reputation - internationally and here at home, …the Center has become an economic driver for the university and the city.”
“Since opening in 2002, researchers have nearly doubled their annual grant funding - $5.6 million to $10 million this year, three new full-time faculty members joined the original staff of six, and the center filled five new administrative positions.”
Clear Language, Important Issues for Cleveland
Help Journalists Paint a Picture for the Reader, Viewer, Listener “parts of the world that are remote, poor and often road-less…” “fever, malnutrition and a grotesque swelling of the limbs and genitals…” “People were bitten by average of 40,000 to 50,000 mosquitoes a year in the villages [he]worked in.” “Tiny threadlike worms…”
“…using two anti-parasitic drugs, ivermectin (which may sound familiar to dog owners as a heartworm treatment) and …”
“This is a big issue in infectious disease, because nobody’s going to support this indefinitely,” he said… It’s like getting a vaccine every year — you need 80-90% coverage.
… That’s not going to work in Papua New Guinea, and it’s not going to work in Cleveland Heights either, because people are just not going to participate in it…”
Make the Story Relatable
Add to your “what you do”: • Section written for patients, public, the media• Why are you doing this work?• Research: what is the goal? If a incremental
outcome, what is long range goal? • If federally funded – why is this a good use of
US taxpayer dollars?• Why is this being done in Minnesota? How will
Minnesota benefit?
Who Looks at Your Faculty/Research Profile – Make it Work for Others
Public Opinion Matters
and It is Instructive for the Science
Community
What Do Americans Think?
the Good News…
Do you believe that we are making enough progress in medical research in the U.S.?
25%
55%
20%
Yes
No
Not sure
Majority: Medical Research is Not Making Sufficient Progress
Source: A Research!America poll of U.S. adultsconducted in partnership with Zogby Analytics in December 2012.
Most Agree: Basic Research is Necessary
Do you agree or disagree with the following statement? “Even if it brings no immediate benefits, basic scientific research that advances the frontiers of knowledge is necessary and should be supported by the federal government.”
32%
42%
11%
6%10% Strongly agree
Somewhat agreeSomewhat disagreeStrongly disagreeNot sure
Source: A Research!America poll of U.S. adultsconducted in partnership with JZ Analytics in December 2012
What Do Americans Think?
the Bad News…
What is the name of the government agency that funds most of the medical research paid for by taxpayers in this country?
16%
16%
19%15%
1%
33% National Institutes of Health
Food and Drug Administration
Dept. of Health and Human Services
Centers for Disease Control and Prevention
Other
Don't know
Few Americans Recognize the National Institutes of Health
Source: A Research!America poll of U.S. adultsconducted in partnership with Zogby Analytics in January 2014
Most Americans Don’t Know Where Research is Conducted
Can you name any institution, company or organization where medical and health research is conducted?
42%59%
I can
I cannot
Mayo Clinic 10%CDC 9%NIH 7%Johns Hopkins 6%St. Jude 4%Pfizer 3%American Cancer Society 3%Merck 2%Duke Univ./Med. Ctr. 1%OR Heath & Sci. Univ. 1%UCSF 1%Other 52%
Source: National Public Opinion Poll, October 2011, JZ Analytics for Research!America
Most Americans Can’t Name Living Scientist
Can you name a living scientist? (first volunteered responses)
Source: Your Congress – Your Health Survey, March 2011Charlton Research Company for Research!America
34%66%
Yes
No
Stephen Hawking15%James Watson 1%Jane Goodall 1%Bill Nye
1%Michio Kaku 1%Neil Degrasse Tyson 1%Other 14%
In general, do you believe scientists effectively communicate the impact of their work on the nation’s health and the economy?
31%
35%
34%Yes No
Not sure
Source: A Research!America poll of U.S. adultsconducted in partnership with Zogby Analytics in January 2014
Opinions Split: Do Scientists Communicate Effectively?
A Colossal Disconnect The public:
Wants and expects research to deliver for them and their families It’s not making enough progress
But… They don’t know where research is conductedDon’t know what NIH is Many can’t name a living researcher
A Colossal Disconnect
And the scientific community doesn’t do a very good job at informing the public about medical and science issues.
What To Do?
Be an advocate for sufficient funding: speak up, get engaged, reach out Take advantage of teachable moments: popular movies, TV programs like “Monsters Inside Me,” public figures and celebrities like George Clooney who are active in global concerns News stories – West Nile, Dengue outbreaks in Florida, the latest flu strain, NTDs in Texas, drug resistance Help the public ‘connect the dots’
Who are the Key Congressional Decision Makers, 113th Congress?
Rep. Hal Rogers(R-KY)
Chair, HouseAppropriations
Committee
Rep. Jack Kingston(R-GA)
Chair, HouseLHHS Appropriations
Subcommittee
Sen. Barbara Mikulski(D-MD)
Chair, SenateAppropriations
Committee
Sen. Tom Harkin(D-IA)
Chair, LHHS,AppropriationsSubcommittee
• House Appropriations – Defense Subcommittee• Congressional Caucus on Global Health Co-Chair• Congressional Anti-Human Trafficking Caucus• Peace Corps Caucus
Senator Al Franken • Committee on Health Education, Labor and
Pensions (HELP)• Committee on Judiciary• Strong supporter of immigrant and refugee
health
What Resonates Today with Congress?
Maintaining US leadership on the global stage in innovation and technology National security – keeping America and the troops safe Healthier countries less susceptible to strife and conflict, more likely to build their economies which could lead to less dependence on the US and perhaps one day – can be economic partners
Research Creates Good JobsEssential to Make it LocalJobs, Jobs, Jobs Funding amount brought to your institutionEmploy how many?Indirect economic impact:
Moved from another state? Bought a home? Bought a car? Kids in local schools? Pay taxes?Utilize local lab supplier or other vendors, contractors?Utilize Fed X, UPS,
or local coffee shop?
University of Minnesota NIH Funding
FY 2013 $263,576,394 606 grants
Year end 2013 – University of Minnesota ranked 20th in NIH Funding
“It’s the smart thing to do and it’s the right thing to do.”
Addresses public concerns about the use of taxpayer dollars
Conveys the moral, humanitarian mission which is the real driver for these efforts
A Time of Unprecedented Change for Medicine and Research
15 years ago – beginnings of now dramatic erosion of physician autonomy
2009 IOM Report: To Err is Human: Building A Safer Health System
Outside stakeholders in science and medicine much more muscular in their involvement in clinical medicine
Skyrocketing and seemingly runaway health care costs
Medicine and research now viewed in terms of limited resources and priorities A time for competence:
Priorities: examined carefully and through different lenses
Have to prove you are using resources wisely
What is the ROI?
Unprecedented Change…
• The public has to change• Congress has to change• The medical and research
communities have to change
Unprecedented Change…
You Have To Change
Your Call to Action: Advocacy
o Change the culture of medicine and science to one that embraces advocacy
o Model outreach - Reward it - Expect it - Demand it o Grab the reins and reshape what it means to be a global
health professional in today’s world o Actively engage in national policy discussionso What happens in Washington, DC does not stay in
Washington, DC
You Have To Change
o Begin to reshape the culture of what it means to be a global health professional in today’s world
o Actively engage in national policy discussions – what happens in Washington, DC does not stay in Washington, DC
o Model outreach - Reward it - Expect it - Demand it
“Scientists are obliged to make the case for science to lawmakers. …If I had to do it all over again I would spend more time talking to general audiences and public officials, penning op-eds.”
~J. Michael Bishop, MD Nobel laureate
March 15, 2011
“Every public health decision is made on a political decision.”
~William Foege, MD, MPH2012 Presidential Medal of Freedom
We need to do a better job:
• of embracing advocacy • of communicating with Congress• of communicating with the media• of communicating with the public
You have a duty and commitment to lifelong learning and the translation of that expertise into discourse with and service to society.