Category Archives: Health Services Research

A Weekly Advocacy Message from Research!America: Rallying more defenders of science

Dear Research Advocate:

In recognition of his many accomplishments as a champion for research, Research!America Chair and former Congressman John Edward Porter was honored by the National Academy of Sciences with the Public Welfare Medal, the Academy’s most prestigious award. This well-deserved acknowledgment of Porter’s tireless efforts to advance innovation and engage scientists in advocacy should motivate advocates to follow his lead and speak up about threats to our nation’s research ecosystem. Read our statement on the award ceremony here.

In his remarks, Mr. Porter noted that “political judgment should never be allowed to be substituted for scientific judgment.” This point was particularly well-timed as political attacks on science, particularly health services research, continue unabated.

A case study from Louisiana highlights the importance of health research in saving lives. Children’s Hospital in New Orleans had an outbreak of a deadly hospital-acquired infection, mucormycosis in 2008-09. In response to several outbreaks in recent years, the CDC launched new targeted initiatives to help hospitals and health departments share information with the public about hospital-acquired infections.This type of public health work, based on health services research findings, is critical to delivering high quality care, reducing medical errors and protecting patients. Continue reading →

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Medical and Health Research Matters


Watch backstage interviews with Research!America’s 2014 Advocacy Award winners talking about the importance of medical and health research to improve health and save lives.

“You don’t have to be a scientist in order to move mountains. People can advocate by running road races, by volunteering, by working towards legislation, it’s all essential, the science and all the rest of it. That’s the only way we are going to get to a point where we have a healthier nation in the future and it is doable,” said Leslie Gordon, MD, PhD, medical director of the Progeria Research Foundation, winner of the 2014 Paul G. Rogers Distinguished Organization Advocacy Award.  The other winners — Dr. Leroy Hood, Dr. Reed Tuckson, Kathy Giusti, Glenn Close, Reps. Frank Wolf and Chaka Fattah — also describe why it’s important for policy makers and the public to champion medical innovation.

The deadline for nominations for Research!America’s 2015 Advocacy Awards is May 23, 2014. Click here to submit nominations.

A Weekly Advocacy Message from Mary Woolley: We’re all in this together

Dear Research Advocate:

Fostering research and innovation has long been a multi-pronged effort — government, industry, academia, patients and patient organizations, foundations, and individual philanthropists — all working to advance research. The current interest shown by private philanthropists in advancing science is an echo of a phenomenon witnessed a century ago — and a sign of the opportunity available in some way to all of us to accelerate medical progress and maintain our nation’s competitive edge. As reported in a recent front page New York Times article, private donors are stepping up in a big way at a time when scientific opportunity has never been greater. But it is worth noting that even as philanthropic spending is surging, and while it has historically been an important, often energizing component of U.S. leadership in science, the most robust philanthropic support imaginable would still not be sufficient — nor is it intended to — replace federal support.

In tracking medical R&D spending across all sectors over time, Research!America’s annual investment reports not only support the NYT finding that philanthropic spending is growing, but place that spending in perspective. For example, in 2011, NIH spending dwarfed medical- and health-related philanthropic research spending by nearly $29 billion. That does not mean philanthropic giving isn’t important; rather, it demonstrates that the magnitude of funding needed to drive medical progress is too large to rely on individual or foundation giving. Public and industry dollars are quite simply indispensable to the research pipeline. We call on every sector, every individual (including you billionaires out there!) to step up and increase support. We urge you to fund basic as well as translational research, to identify new approaches and new partnerships, to show us all how to take risks and demand accountability, and to work with and for the overall research enterprise. And — perhaps most important of all — commit to giving confidence to young scientists that their work is valued and will be sustained.

There’s no question about it: We all play a role in achieving better health and quality of life, very much including those who volunteer to participate in clinical trials. We are proud to spread the word about a new campaign initiated by the Pharmaceutical Research and Manufacturers of America (PhRMA) and the National Minority Quality Forum (NMQF). The “I’m In” campaign aims to increase diversity in clinical trials and give patients the opportunity to connect with trials in their communities. Research!America polling shows that while Americans are interested in clinical trials, levels of participation are low, especially among African-American, Asian and Hispanic populations. Advancing medical progress means participating! Our newly released America Speaks, Volume 14 poll data summary booklet includes relevant information on public attitudes about clinical trials.

One time-sensitive way you can exercise your responsibility for advancing medical progress is by asking your representatives in Washington to join the chorus of legislators who support strong, continued funding for research. Members of the House and Senate have the opportunity to share their priorities with the appropriations committees until April 4. Send a note to your representatives urging them to submit appropriations requests that support robust medical research funding in FY15.

Finally, I encourage you to review our just-released 2013 Annual Report, which thanks all our members and supporters — you! — for working with us to inform and engage policy makers, media and the public.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Snow — not the debt limit — shuts down the government

Dear Research Advocate,

Ironically, the government is closed down today. But that’s due to a major snowstorm, not because of failure to agree on increasing the debt limit! Agreeing to increase the debt limit is an encouraging sign that this Congress, weighed down as it is by ideological and political differences, and with record- low approval rankings from the public, can get its job done! Our job is to be sure research is a top priority in this election year — spoken of with conviction by all candidates and by the media and others who influence them.

Standing tall among Members of Congress who champion science are the Chair and Ranking Member of the House Appropriations’ Commerce, Justice, Science and Related Agencies subcommittee, Rep. Frank R. Wolf (R-VA-10) and Rep. Chaka Fattah (D-PA-02). At our upcoming March 12 Advocacy Awards dinner, Research!America will honor Reps. Wolf and Fattah with the Edwin C. Whitehead Award for Medical Research Advocacy, saluting their tireless efforts to champion policies that promote federal and private sector medical research and innovation. Be sure to join us!

Robert Samuelson observes in The Washington Post that Congress, whether by action or inaction, is making too many decisions “on the sly,” without real public awareness or comprehension. Samuelson says that in so doing Congress is compromising priorities like defense and medical research while simultaneously failing to address tax and entitlement reform. I think it is telling that he chose to identify the loss of purchasing power by the NIH as one of three critical problems created as our elected representatives fail to find a clear path through the ideological storm. One of these days they will make those major decisions, and that’s when it will pay off that research has been well-positioned as a top national priority. We must continue to make the case and make it forcefully.

Even as we work to keep our issue in the forefront of big-picture policy change, we must at the same time make our case via the appropriations process, which is proceeding, for the first time in years, according to ‘regular order.’ Right now, in FY14, funding for NIH is lower than in FY12 (and in constant dollars is lower than FY03!) — a shortfall that makes absolutely no sense if the goal is to serve the best interests of America and Americans. Other science agencies are underfunded as well, and the policy environment for private sector research and innovation is not compatible with our nation’s goals of global leadership. As you prepare to pound the pavement and take to social media to make the case to appropriators for research, take inspiration and new data from the following:

And this: According to the National Retail Federation, Americans are expected to spend $17.3 billion in celebration of Valentine’s Day. That amount would fund the National Heart, Lung and Blood Institute for more than five years! We are a wealthy nation; we can well afford to spend more on the future of health than we currently are.

Sincerely,

Mary Woolley

Hematologists Fight for Biomedical Research Funding, Physician Reimbursement at 2013 ASH Annual Meeting

Guest post by ASH Government Relations, Practice, and Scientific Affairs.

AshBetween presentations of cutting-edge research and sessions on emerging trends in hematology, attendees of the American Society of Hematology (ASH) annual meeting last December emailed Congress and strategized ways to encourage Members of Congress to protect existing and future NIH funding and reform physician payment under Medicare.

The 2013 ASH Annual Meeting presented a vital opportunity for hematologists to mobilize on these two challenging issues facing the field and ASH’s group of member advocates, called the ASH Grassroots Network, had a strong presence at the recent annual meeting in New Orleans. During the meeting, members of the Grassroots Network gathered for a special luncheon event to learn more about ASH’s current advocacy priorities and how they could become effective advocates for the following immediate issues in Congress of critical importance to hematology:

  • FY2014 budget negotiations, particularly regarding NIH funding
  • A 24 percent cut in Medicare reimbursement payments to physicians, mandated by the flawed Sustainable Growth Rate Formula (SGR)
  • The February 7, 2014, deadline to raise the debt ceiling  Continue reading →

A Weekly Advocacy Message from Mary Woolley: Promising process; disappointing progress

Dear Research Advocate:

The omnibus appropriations bill about to become law demonstrates that bipartisanship and pseudo-regular order is achievable. We won’t know for sure if we have true “regular order” until Congress proceeds through the FY15 appropriations process in a timely manner — something that hasn’t happened for many years. The importance of regular order is that the public’s interests are heard from in hearings, and every Member of Congress participates in priority-setting instead of only having the opportunity to cast a single up-or-down vote. Regular order is worth working toward, since at least one priority we all care about did not fare well in the omnibus.

The omnibus has failed to fund NIH at a level that fully reverses the impact of sequestration on the agency’s baseline funding level, much less establishes a growth trend that can fully unleash the potential inherent in the sequencing of the human genome and other research breakthroughs. As Drs. Paul Stoffels and Alan Leshner make crystal clear in an op-ed in Politico Magazine, we can’t settle for “better than sequestration.” If our nation wants to thrive, we need to grow our investment in science. Between 2010 and 2013, U.S. federal investments in science fell to less than 1% (.82%) of the economy. That’s the lowest it’s been in 50 years! As you know, this comes at a time when foreign nations are rapidly ramping up their R&D programs and taking a page from our playbook. Remember that global competitiveness in medical research is a pivotal determinant of our global economic competitiveness overall. We aren’t just talking about the future of our scientific enterprise, we are talking about the future of our economy. Are we truly willing to cede leadership in global R&D? (See also our statement cited in The Hill and other media outlets, as well as my interview today with UDC.) Continue reading →

Statement by Research!America president and CEO Mary Woolley on Omnibus Bill

We applaud portions of the omnibus bill that support the nation’s research, innovation and public health ecosystem, which works to assure our future health and economic well-being. The growth in funding for the Food and Drug Administration, fueled in part by the common-sense return of the 2013 user fees, as well as the increases for the Centers for Disease Control and Prevention, the Agency for Healthcare Research and Quality and the National Science Foundation are welcome news.

But funding for the National Institutes of Health has been kept well below the level of scientific opportunity. We must eliminate sequestration once and for all, and grow our investment in NIH in order to slow and halt the progression of diseases and disabilities ranging from Alzheimer’s to diabetes to traumatic brain injury. The appropriators have worked in good faith to move the nation forward.  But as long as Congress avoids the primary issues fueling our national debt – tax and entitlement reform – it will be difficult to invest robustly in solutions to our problems.

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Top 10 Most Popular Research!America Blog Posts of 2013

As the year comes to an end, let’s revisit the top ten most popular Research!America blog posts in 2013 (based on page views) that highlighted the importance of making research for health a higher national priority. We’re thankful for our many outstanding guest bloggers including early career scientists, leaders of industry, academia, patient groups and scientific societies who strongly believe in the promise of scientific discovery and medical innovation to build healthier lives.

10) Millennials Move On

August 14: Guest blog post by Tyler Wiechman on why the millennial generation is leaving science, from his personal experience. “If funding was more available for these VITAL research programs, students of this generation would be much more optimistic about their personal future in clinical research and able to get into academia or the industry of their choice.” Read the post, here.

9) The Science Policy Group at the University of California, San Francisco

July 22:   The Science Policy Group at UCSF speaks out about the “crisis situation” brought about by the sequester. “We have observed a number of our postdoctoral colleagues leave UCSF due to the budgetary constraints both they and their PIs were experiencing.  The immediate consequences, such as sudden lay-offs and premature termination of promising research careers, are obviously tragic.” Read the post, here.

8) Research!America Hosts NTD Forum at Tulane University

May 17: Neglected tropical diseases (NTDs) commonly associated with the developing world, have been identified in many parts of the country including Louisiana.  Research!America hosted an NTDs event at the Tulane University School of Public Health and Tropical Medicine in New Orleans with health and policy experts. Read highlights of the event, here.

7) Research!America’s Inaugural Advocacy Academy

September 19: Highlights of the inaugural Advocacy Academy which brought 12 postdoctoral researchers from across the U.S. for a two-day advocacy training program in Washington, D.C. that culminated in Capitol Hill visits with their representatives. Read the post (and see photos), here.

6) Public Health Thank You Day, November 25

November 6: Every year, Research!America and other leading health organizations take time to recognize the public health professionals across the country who protect us from disease and injury. The 2013 Public Health Thank You Day blog post describes the round-the-clock activities to address major health threats and promote good health. Learn more about the initiative, here.

5) Neglected Tropical Disease Research in Louisiana: Saving Lives and Creating Jobs

April 24:  Research!America produced two short compelling videos about neglected tropical diseases and patients with NTDs that were unveiled at the NTDs Louisiana event (see post #8). Watch the videos, here.

4) Top “disruptive technologies” that could revolutionize health care and research

May 30: Blog post about a McKinsey Global Institute’s report that identified 12 “disruptive technologies” that could be transformative for the U.S. economy. “It doesn’t take much imagination to see many of these technologies making an indelible mark on health care and public health.” Sound interesting? Read the post, here.

3) Announcing Research!America’s Inaugural Advocacy Academy

June 4: The third most popular post of 2013 was the announcement of the Research!America’s Inaugural Advocacy Academy which focused on engaging early-career scientists in research advocacy and science policy. The program is an opportunity for postdoctoral fellows to learn how to incorporate advocacy and effective communications into their role as a scientist. (see post #7).  Take a look, here.

2) Cuts to NIH research squeezes young scientists out

July 25: The second most viewed; op-ed by Abigail Schindler, PhD, postdoctoral fellow at the University of Washington, Department of Psychiatry and Behavioral Sciences and co-leader of the Seattle Forum on Science Ethics and Policy published in The Seattle Times. Abigail bemoaned the consequences of sequestration (across-the-board budgets cuts) to science and the careers of young scientists.  Read more here.

1) Heroes for scientific knowledge

October 23: Our most popular post of the year! Benjamin Caballero MS, a PhD candidate at the Albert Einstein College of Medicine (one of the Research Matters Communications Workshop participants) wrote this entry about the importance of scientists communicating their research to the public and policy makers.

“Science is in need of heroes.  It is important to realize that each and every one of us have a role and can become one. Inform yourself, ask questions to the experts and learn how your day-to-day life is benefited from the scientific endeavor. Be a part of human progress, become the hero science needs.”

 Read the post, here.

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Stay tuned for 2014!

Health R&D Spending Moves Slowly Upward, Driven by Industry, Philanthropy and Voluntary Health Associations

Federal R&D Funding Remains “Woefully Inadequate” to Address Health Threats and Global Competitiveness

Highlights:

  • Overall health R&D spending in the U.S. increased by $4.3 billion (3.5%).
  • Industry, philanthropy and voluntary associations led gains in R&D spending.
  • Federal R&D spending rose 2.2% but a considerable amount is the result of agency reorganization and reclassification.

ALEXANDRIA, Va.—December 17, 2013After declining in FY10-11, health-related research and development (R&D) spending in the U.S. increased by $4.3 billion (3.5%) in FY11-12, according to Truth and Consequences: Health R&D Spending in the U.S. (FY11-12), the 10th edition from Research!America highlighting estimates of U.S. investments. This spending increase was largely driven by industry, philanthropy and voluntary health associations as well as changes in the classification of spending within a few federal agencies. For the full report, click here.

“Industry, philanthropic and voluntary health association R&D spending increases offer a glimmer of hope in this dark era for medical research,” said Research!America’s chair, former Congressman John E. Porter. “Stagnant federal investments jeopardize our nation’s ability to advance medical progress and fuel private sector innovation, a catalyst for job creation and economic recovery.” Continue reading →

Majority of Americans Believe Another Government Shutdown Likely in Coming Months; Last One Harmful to Medical Research

New National Poll Reveals Many Respondents Predict China will Surpass U.S.
in Science and Innovation by 2020

ALEXANDRIA, Va.—December 3, 2013—Nearly two-thirds (65%) of Americans say it’s likely there will be another government shutdown in the months ahead as Congress continues to debate deficit and budget issues, according to a new national public opinion poll commissioned by Research!America and the American Society of Hematology. This sentiment is shared across party affiliations: Democrats (66%), Republicans (65%) and Independents (65%). There is also consensus across party lines that government dysfunction has consequences. A majority of Americans (57%) say the shutdown in October caused significant harm to many government-funded programs including medical research, defense and education. Democrats (68%) and about half of Republicans (49%) and Independents (51%) agree.

On the topic of sequestration, a plurality (44%) says Congress must tackle tax and entitlement reform to reduce the deficit instead of continuing the 10 years of across-the-board cuts; another 16% say sequestration is not the right way to reduce the deficit. Less than a quarter (23%) believe the across-the-board cuts are a way of ensuring that many government programs share the pain, and 17% say they’re not sure. In general, 62% of Americans say they’re concerned about the long-term effects of sequestration on advances in health care such as the development of new drugs and other treatments.

“Our poll demonstrates uneasiness among many Americans about the ramifications of deep spending cuts to programs that are critical to our health and well-being,” said Mary Woolley, president and CEO of Research!America. “Americans want Congress to reach a budget deal that protects medical and health research, at least in part because of concern that our nation is at risk of losing our global leadership position in science and innovation.” Continue reading →

The urgent need to address oral health in the US

By Foti Panagakos, DMD, PhD, global director of scientific affairs at Colgate-Palmolive

Panagakos_FotiOral health has been demonstrated to be associated with, and an important influencer of, overall health.  The role of prevention is critical to reducing, and eventually eliminating what the WHO has deemed an epidemic, caries or cavities in teeth.  This is the most prevalent disease among children, with more than 60% of 5 year olds having at least one cavity.  In addition, research over the last 25 years has shown that in patients who have a chronic disease, such as diabetes or cardiovascular disease, and concomitant serious gum or periodontal disease, the treatment of the oral disease will improve the control and management of the systemic chronic disease.

While these findings have stimulated action among the medical and dental communities to work collaboratively in identifying and treating oral disease in these very vulnerable patients, it is the fact that the oral disease is preventable in the first place which should take precedence in our management of this problem.  Developing and implementing preventative technologies is the solution to addressing both of these issues. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Winning Hearts and Minds and Votes

Dear Research Advocate:

It has been a week since the Budget Conference Committee’s first meeting. The next public meeting is scheduled for November 13. Staffs are at work, and various Members are talking. There are no concrete signs of progress. What I keep coming back to is the failure of our nation’s decision makers to recognize and act on the reality that the priorities of Americans are reflected in both discretionary and entitlement programs. The persistence of sequestration underscores Congress’ inability to make decisions and choose priorities. The sequestration era has run its course, dealing Congress record lows in terms of public support; it’s past time to end the era and move on.

Recently I shared my letter to the Budget Conference Committee; it argued for an end to sequestration, pointing out the importance of investing in medical research as a pragmatic strategy for decreasing the national debt and deficit. This week I followed up with a letter on the importance of health research, pointing out how it helps identify smart medical innovation and optimal health care financing and delivery. The letter showcases the essential role of health economics, health services, public health, behavioral and social science research in assuring quality medical innovation and smart health care delivery. We are concerned that if the research stakeholder community at large does not speak out for this critical research, it will be compromised or even defunded altogether. Please join us in raising your voice. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Moneyball

Dear Research Advocate:

Just in time for the World Series, a national campaign to make evidence-based government spending decisions has been announced. Moneyball for Government, a project of Results for America, advocates prioritizing limited taxpayer dollars by investing strategically in what works, eschewing “gut level” instinct for metrics-driven decision-making. Stakeholders in medical and health research sometimes have difficulty measuring or agreeing on metrics that matter; it’s time to work through this challenge so that when stakeholders talk about research accountability — in the current budget conversations or in any context — we can speak with one metric-driven voice to emphasize the returns on research investment in both lives and money saved.

Research!America is working to assure our message is in the forefront of the bipartisan Budget Conference Committee’s deliberations. We have written to the committee expressing the importance of investing in medical and health research to address the national debt and deficit. We urge the committee to eliminate the sequester; it continues to take a toll on our economy and our society, in part by eroding our capacity to innovate in the medical and health fields. Please join us in reaching out to your representatives to share the importance of prioritizing investments in research. Continue reading →

Research!America President and CEO Mary Woolley on Al Jazeera America News Network, October 18, 2013

Mary on Aljazeera government shutdown 10-18-13

Big Loss for Science
Science and Medical Research Impacted by Government Shutdown

Last Friday, Research!America President and CEO Mary Woolley was interviewed by Al Jazeera America television news network on the effects of the government shutdown on science and medical research. “Science is 24/7. The government was shutdown but Alzheimer’s was not shutdown, cancer wasn’t, diabetes wasn’t.”

When asked about the biggest problem about the shutdown for science, Woolley said, “I think it was this dispiriting message that science isn’t prioritized anymore.”

Watch the full interview here.

Research!America Honors Leaders in Medical and Health Research Advocacy

Glenn Close, Dr. Leroy Hood, Dr. Reed Tuckson, Kathy Giusti and the Progeria Research Foundation to Receive 2014 Research!America Advocacy Awards

ALEXANDRIA, Va.-October 22, 2013-Research!America’s 18th annual Advocacy Awards will honor extraordinary advocates of medical and health research who are distinguished in their commitment to advancing medicine and health. The event will take place on Wednesday, March 12, 2014, at the Andrew W. Mellon Auditorium in Washington, DC, as a part of Research!America’s 25th anniversary commemoration.

The 2014 Advocacy Award winners are actress Glenn Close and her family; Leroy Hood, MD, PhD, president, Institute for Systems Biology; Kathy Guisti, founder and CEO of the Multiple Myeloma Research Foundation (MMRF); Reed Tuckson, MD, managing director, Tuckson Health Connections; and The Progeria Research Foundation (PRF). The winner of the Edwin C. Whitehead Award for Medical Research Advocacy will be named by Research!America’s Board of Directors later this year.

“This year’s honorees have transformed the lives of many individuals across the country through their remarkable achievements and advocacy for medical and health research,” said Mary Woolley, president and CEO of Research!America. “Their unwavering dedication is helping to elevate research in the national conversation and inspire a new generation of advocates.” Continue reading →