National Health Research Forum 2004

National Health Research Forum 2004

Living Longer, Better, Wiser: Putting Research on the Public Agenda
March 16, 2004

Research!America's National Forum panelists discussed topicsincluding scientists' roles in public education, media relationships and publicpolicy making, as well as the rising cost of health care and healthdisparities.

Discussions Highlighted Importance of Involvement, NewApproaches

Research!America held its National Forum "Living Longer,Better, Wiser: Putting Research on the Public Agenda" on March 16, 2004. Paneldiscussions covered topics including scientists' roles in public education,media relationships and public policy making, as well as the rising cost ofhealth care and health disparities.

Winning Greater Influence for Science: A Conversation

National Forum 04
Bill Leinweber, The Honorable John Edward Porter,Ruth Wooden, Lee Kravitz

Moderator: Bill Leinweber, vice president, Research!America

Participants:

Lee Kravitz, editor-in-chief, PARADE magazine

The Honorable John E. Porter, partner, Hogan & Hartson; former member, U.S. House ofRepresentative and chair of the Appropriations Subcommittee on Labor, Healthand Human Services, and Education; and Research!America board member

Ruth Wooden, president, Public Agenda, Research!America Board Member

The forum began with a panel session "Winning GreaterInfluence for Science: A Conversation" moderated by Bill Leinweber. The panel--whose title is borrowed from an essay by Daniel Yankelovich, Public Agenda's co-founder and chair--discussedthe need for leaders to understand the public's point of view and for citizensto know more about policy issues so they can make informed decisions.Addressing a question about how to provide a balance of media coverage andsound science, Lee Kravitz said, "people whoaren't journalists feel that if everything in the story isn't positive abouttheir work or organization, then they take the slightest bit of contrariness inthe story as a bad thing. The fact is, that is what gives journalistic storiescredibility. Readers would be skeptical if stories didn't have another side.Don't in your own mind blow that criticism out of proportion. Stay on message.The media is out to do what's best for the public. Don't view them asadversaries. View them as allies in the effort toward truth."

The Honorable John Edward Porter in turn addressedscientists' engagement in public policy. He said the creative separatenessscientists have maintained may have worked over the past 20 years, but that ithas been a Faustian trade-off. "You lack influence, but you get independence,"he stated. "Yankelovich said ‘20 years ago that was good, but today it's bad.'But to me, it has always been bad. That's not the way to achieve independence;in fact, it's quite the opposite. If you don't get involved, independence maygo right out the window."

Ruth Wooden said scientists mustalso work with citizens. "The assumption that science illiteracy among thepublic is the problem really misses the point when it comes to science policy,"she said. "The goal of bringing non-scientists to a scientific mindset createsan atmosphere of moral superiority and the patronizing of your audience and islikely to backfire." She said that to engage the public, which is essential forany major initiative to succeed, the goal must be to improve public judgmentrather than public education.

"Scientists must lead this process of public engagement.Why? Because you know best what is at stake. In the policy arena, you need thepublic more than the public needs you. The public has the right to engage inthe national debate about science policy, not simply because they pay for muchof it, but because of science's importance to their own lives." Wooden said theterm "sound judgment" is part of a conceptual framework used to describe thestages the public goes through to arrive at a policy preference. "At the coreof this framework is the basic assumption that policy decisions are alwaysabout choices," she said. "This is a social process. It requires considerable‘working through' for the public to reconcile possible choices with deeply heldbeliefs and behaviors."

Challenges Facing the Nation's Research Enterprise

National Forum 2004
A. Cornelius Baker; G. Steven Burrill; Kerry Dooley;Joseph Feczko, MD; Loretta Sweet Jemmott, PhD, FAAN, RN; and Elias Zerhouni, MD

Moderator: Juan Williams, senior correspondent, National Public Radio

Panelists:

A. Cornelius Baker, executive director, Whitman-WalkerClinic

G. Steven Burrill, CEO, Burrill & Company

Kerry Dooley, pharmaceutical and FDA reporter, BloombergNews

Joseph Feczko, MD, president, Worldwide Development, PfizerInc

Loretta Sweet Jemmott, PhD, FAAN, RN, professor ofpsychiatric mental health nursing and director, Center for Urban HealthResearch, University of Pennsylvania School of Nursing

Elias Zerhouni, MD, director, National Institutes of Health

The second panel discussion, "Challenges Facing the Nation'sResearch Enterprise," moderated by Juan Williams,covered the growing cost of health care. Elias Zerhouni, MD, emphasized the relationship between research and the growing cost of healthcare. "Health care right now costs about 14 percent of GDP. It's a 1.3 trillioneconomy," Zerhouni said. "At the current growth rate, we will double theexpenditures of health care over the next 10 years."

Joseph Feczko, MD, added that the issue of health care costs is really about the cost ofdisease, particularly in American society where people have a tendency to payfor the more expensive heart transplant, but do not want to pay for lessexpensive prevention.

Steven Burrill shared that thecost of drug discovery and development has increased dramatically. "In the1960s, development cost an average of $2 million per drug and took about eightyears. Today, it takes twice as long and costs about $1 billion," he said.

A. Cornelius Baker added that scientists have made tremendous progress in drug developmentand prevention, specifically as they relate to HIV. "We must acknowledge theprevention successes we have," he said. "We are at a critical crossroad. Itreally comes down to access. How do we develop and have a well designed systemof universal health care from pre-birth to death? In the United States, how dopeople who are taxpayers who contribute to a research enterprise benefit fromit if they have no health care? That's a legitimate question to hold ourpolicy-makers accountable for."

Opportunities Facing the Nation's Research Enterprise

National Forum 2004
Susan Dentzer; Julie L. Gerberding, MD, MPH; RobertLanger, ScD; J. Michael McGinnis, MD, MPP; Sidney Taurel; and Phylecia Wilson

Moderated by: Juan Williams, senior correspondent, NationalPublic Radio

Susan Dentzer, correspondent, "The NewsHour with JimLehrer"

Julie L. Gerberding, MD, MPH, director, Centers for DiseaseControl and Prevention

Robert Langer, ScD, professor of chemical and biomedicalengineering, Massachusetts Institute of Technology

J. Michael McGinnis, MD, MPP, senior vice president anddirector, Health Group, The Robert Wood Johnson Foundation

Sidney Taurel, board chair, president and CEO, Eli Lilly& Company

Phylecia Wilson, cancer survivor and American Cancer Societyvolunteer

The final panel, "Opportunities Facing the Nation's ResearchEnterprise," discussed the importance of public-private partnerships to addresschallenges. Julie L. Gerberding, MD, MPH, said "there's a huge gap between the world we imagineand the world that we live in. Public health research is the answer to thatgap. We must move from clinical to pre-clinical measures and take that furtherso we're emphasizing public health research as the way we're developing theknowledge to protect our society whether from emerging threats or chronicdisease."

Sidney Taurel agreed scientists must start by building from the synergy ofacademia and health care industry partnerships.

A change in the nation's research paradigm must also occur,said J. Michael McGinnis, MD, MPP. "The good news is that we no longerthink that chronic disease is an inevitable consequence of the aging process,"he said. "We now know that chronic disease is the result of interactions ofphenomena in several well-defined domains: our genetic endowment, our socialdomains, our physical environment, our choices and the health care we receive.The difficulty is that these are not easy issues. The real change occurs at theintersection of these domains. Until we can mount a new interdisciplinarycapacity and competence to work and understand the phenomenon at thoseintersections of domains of influence, we won't be able to make the progressagainst difficult challenges such obesity, which is at the intersection of allof these factors. We need to train a new generation of researchers who feelcomfortable working at those intersections. Partnerships are crucial."

Phylecia Wilson said "When I tell peoplemy story, it helps people understand where we are and where we are not withresearch." She noted the health community must look for more researchers whothink outside of the box. "For example, Dr. Brian Druker who is credited withdeveloping Gleevec, received his early grants from the ACS. And, Dr. DavidBaltimore laid the groundwork for this work, and he wasn't even working withcancer, but he was approached because ACS felt his work was significant."

Susan Dentzer added that "there is a very real role for the news media in beingclear about what the current situation is and understanding it. There's a rolefor everybody in this room to communicate more clearly with [the media] andthrough us, with the public. The sky's the limit in how much better we can allget at this."

Following the forum at a luncheon for attendees, MarkMcClellan, MD, PhD, outgoing commissioner of the FDA, announced the release ofan FDA report "Challenges and Opportunity on the Critical Path to New MedicalProducts." The report provides analysis of the slowdown, instead of theexpected acceleration, in innovative therapies reaching patients-and identifieschallenges to medical product development, prioritizes the problems and offerssolutions.

Because of rising costs, researchers concentrate theirefforts on products with potentially high market return such ascounterterrorism. Less common diseases and preventions are becoming morechallenging. And, with rising health care costs, many are concerned that thenation will soon be unable to pay even for existing therapies. If these costsand challenges continue to increase, innovation will stagnate.

The FDA's recommendations include a development tool kit,containing powerful new scientific and technical methods such as animal orcomputer-based predictive models, biomarkers for safety and effectiveness andnew clinical evaluation techniques.

To view the full report, visit www.fda.gov/oc/initiatives/criticalpath/whitepaper.html.

Respondents:

Debra Lappin, JD, past chair, National Arthritis Foundation

Alan Leshner, PhD, CEO, American Association for theAdvancement of Science

Phyllis Wise, PhD, dean, Division of Biological Sciences,Department of Human Physiology, University of California-Davis

Media Contacts

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The capabilities are enormous, a little bit of research can pay off quite a bit in the long run.
Paul D’ Addario, retinitis pigmentosa patient