2004 National Health Research Forum

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

Research!America’s National Forum panelists discussed topics including scientists’ roles in public education, media relationships and public policy making, as well as the rising cost of health care and health disparities.

Discussions Highlighted Importance of Involvement, New Approaches

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

Winning Greater Influence for Science: A Conversation

Above: 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 of Representative 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 Greater Influence 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–discussed the need for leaders to understand the public’s point of view and for citizens to 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 who aren’t journalists feel that if everything in the story isn’t positive about their work or organization, then they take the slightest bit of contrariness in the story as a bad thing. The fact is, that is what gives journalistic stories credibility. 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 as adversaries. View them as allies in the effort toward truth.”

The Honorable John Edward Porter in turn addressed scientists’ engagement in public policy. He said the creative separateness scientists have maintained may have worked over the past 20 years, but that it has 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 may go right out the window.”

Ruth Wooden said scientists mustalso work with citizens. “The assumption that science illiteracy among the public 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 is likely to backfire.” She said that to engage the public, which is essential for any major initiative to succeed, the goal must be to improve public judgment rather 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 the public 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 much of it, but because of science’s importance to their own lives.” Wooden said the term “sound judgment” is part of a conceptual framework used to describe thestages the public goes through to arrive at a policy preference. “At the core of this framework is the basic assumption that policy decisions are always about choices,” she said. “This is a social process. It requires considerable ‘working through’ for the public to reconcile possible choices with deeply held beliefs and behaviors.”

Challenges Facing the Nation’s Research Enterprise

Above: 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-Walker Clinic
• G. Steven Burrill, CEO, Burrill & Company
• Kerry Dooley, pharmaceutical and FDA reporter, Bloomberg News
• Joseph Feczko, MD, president, Worldwide Development, Pfizer Inc
• Loretta Sweet Jemmott, PhD, FAAN, RN, professor of psychiatric mental health nursing and director, Center for Urban Health Research, University of Pennsylvania School of Nursing
• Elias Zerhouni, MD, director, National Institutes of Health

The second panel discussion, “Challenges Facing the Nation’s Research 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 trillion economy,” 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 of disease, particularly in American society where people have a tendency to payfor the more expensive heart transplant, but do not want to pay for less expensive prevention.

Steven Burrill shared that thecost of drug discovery and development has increased dramatically. “In the 1960s, development cost an average of $2 million per drug and took about eight years. 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 development and prevention, specifically as they relate to HIV. “We must acknowledge the prevention 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 system of universal health care from pre-birth to death? In the United States, how dopeople who are taxpayers who contribute to a research enterprise benefit from it if they have no health care? That’s a legitimate question to hold our policy-makers accountable for.”

Opportunities Facing the Nation’s Research Enterprise

Above: Susan Dentzer; Julie L. Gerberding, MD, MPH; Robert Langer, ScD; J. Michael McGinnis, MD, MPP; Sidney Taurel; and Phylecia Wilson

Moderated by: Juan Williams, senior correspondent, National Public Radio

Panelists:

• Susan Dentzer, correspondent, “The NewsHour with Jim Lehrer”
• Julie L. Gerberding, MD, MPH, director, Centers for Disease Control and Prevention
• Robert Langer, ScD, professor of chemical and biomedical engineering, Massachusetts Institute of Technology
• J. Michael McGinnis, MD, MPP, senior vice president and director, Health Group, The Robert Wood Johnson Foundation
• Sidney Taurel, board chair, president and CEO, Eli Lilly & Company
• Phylecia Wilson, cancer survivor and American Cancer Society volunteer

The final panel, “Opportunities Facing the Nation’s ResearchEnterprise,” discussed the importance of public-private partnerships to address challenges. Julie L. Gerberding, MD, MPH, said “there’s a huge gap between the world we imagine and the world that we live in. Public health research is the answer to that gap. We must move from clinical to pre-clinical measures and take that further so we’re emphasizing public health research as the way we’re developing the knowledge to protect our society whether from emerging threats or chronic disease.”

Sidney Taurel agreed scientists must start by building from the synergy of academia 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 longer think that chronic disease is an inevitable consequence of the aging process,”he said. “We now know that chronic disease is the result of interactions of phenomena in several well-defined domains: our genetic endowment, our social domains, 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 the intersection of these domains. Until we can mount a new interdisciplinary capacity and competence to work and understand the phenomenon at those intersections of domains of influence, we won’t be able to make the progress against difficult challenges such obesity, which is at the intersection of all of these factors. We need to train a new generation of researchers who feel comfortable working at those intersections. Partnerships are crucial.”

Phylecia Wilson said “When I tell people my story, it helps people understand where we are and where we are not with research.” She noted the health community must look for more researchers who think outside of the box. “For example, Dr. Brian Druker who is credited with developing Gleevec, received his early grants from the ACS. And, Dr. David Baltimore laid the groundwork for this work, and he wasn’t even working with cancer, 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 being clear about what the current situation is and understanding it. There’s a role for everybody in this room to communicate more clearly with [the media] and through us, with the public. The sky’s the limit in how much better we can all get at this.”

Following the forum at a luncheon for attendees, Mark McClellan, MD, PhD, outgoing commissioner of the FDA, announced the release ofan FDA report “Challenges and Opportunity on the Critical Path to New Medical Products.” The report provides analysis of the slowdown, instead of the expected acceleration, in innovative therapies reaching patients-and identifies challenges to medical product development, prioritizes the problems and offers solutions.

Because of rising costs, researchers concentrate their efforts on products with potentially high market return such as counter terrorism. Less common diseases and preventions are becoming more challenging. And, with rising health care costs, many are concerned that the nation will soon be unable to pay even for existing therapies. If these costs and 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 or computer-based predictive models, biomarkers for safety and effectiveness and new 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 the Advancement of Science
• Phyllis Wise, PhD, dean, Division of Biological Sciences, Department of Human Physiology, University of California-Davis