Third Annual Public Interest Organization Meeting
February 6, 2002 - Bethesda, Maryland
Dr. Gregory Morosco, Director, Office of Prevention, Education, and Control (OPEC), NHLBI, presented some "snippets" of NHLBI's activities to translate and disseminate science-based information to health professionals, patients, and the public. Beginning when the National High Blood Pressure Education Program was launched 30 years ago, the Institute has developed many outreach efforts. Each is founded on a solid scientific base, a partnership approach, and effective education and communication strategies. Four key elements of the Institute's outreach approach are to:
For the 5-year Star Sleeper Campaign (starsleep.nhlbi.nih.gov), which targets children ages 7-10, the NHLBI partners with other organizations and a celebrity (Garfield, © Paws, Inc.) to communicate "Sleep well. Do well."
For the National Heart Attack Alert Program, the Institute and other organizations developed a common message, Act in Time to Heart Attack Signs (www.nhlbi.nih.gov/actintime/index.htm), for immediate and effective penetration of the U.S. marketplace.
To reduce health disparities, the NHLBI is establishing community-based action groups (hin.nhlbi.nih.gov/minority/minmain.htm) across the United States to encourage health promotion activities in communities (e.g., Asian and Pacific Islanders, Native Americans, African Americans, Hispanic Americans) that are at high risk for specific diseases.
Ms. Barbara J. Culliton, Executive Editor, the Genome News Network (gnn.tigr.org/main.shtml), and Vice President for Publishing, The Institute for Genomic Research, Rockville, Maryland, conveyed six important lessons for successful outreach campaigns:
Ms. Culliton noted that journalists are barraged with communications from PIOs and other groups that want to raise awareness and increase funding for particular disease problems. She emphasized that the message that "our disease is the most important medical problem in the United States" is not a good one to convey because disease is not a competitive "game." Similarly, messages that urge increased funding for a specific problem are misinformed, because research advances do not arise from increased dollars, but from scientific opportunities. Ms. Culliton noted that the campaign against breast cancer is one example which demonstrates that "good ideas can't be purchased with money." She encouraged the PIOs to collaborate in identifying relevant scientific opportunities that could be approached through a broader, coherent research effort.
Ms. Culliton also urged the PIOs to be aware that the funding of research implies a promise and that they must be clear about differentiating for their patients and the public what is possible, and what is not possible, through research. While acknowledging that science cannot cure everything, PIOs can report "good news" (i.e., research advances). In closing, Ms. Culliton called for new coalitions with scientists to promote innovative research that may be considered risky, but holds the promise of "fresh results" for difficult disease problems. She noted that genetic research, in particular, is creating "new ways of looking at old problems" and offers enormous potential for new approaches to treatment.
Ms. Nancy Loving, Executive Director, WomenHeart: the National Coalition for Women with Heart Disease (www.womenheart.org), Washington, D.C., presented seven essentials to follow when using the media to communicate a message:
Ms. Loving related these strategies to her experience in organizing WomenHeart, the nation's only advocacy group for women living with heart disease. The mission, or purpose, of the organization is to change how women with heart disease are diagnosed and treated. The target audience is women ages 45-65 with heart disease. Three core messages are to: promote early detection, improve the accuracy of diagnosis, and ensure proper treatment. Obstacles include ignorance of the problem among the media, physicians, and the public; saturation of the market with messages on breast cancer, which have been developed over 20 years; and lack of funding. WomenHeart's strategy for action includes working with 30 national organizations (e.g., YWCA, Hadassah) to disseminate its messages with "a strong voice"; involving new "friends" (e.g., corporations, pharmaceutical companies); and begging for attention. Ms. Loving noted that publication of a key article ("It Couldn't Happen to Me," by Toby Hanlon, Prevention, December 2001) took 2.5 years to accomplish.
Strategies for further involving the media in communicating a message include the following:
Ms. Mary Woolley, President and Chief Executive Officer, Research!America (www.researchamerica.org), Alexandria, Virginia, described her organization, identified available "tools" for PIOs to use in advocating for their causes, and suggested ways that Research!America could help the PIOs. In her remarks, she agreed with the previous speakers on several key points:
Research!America, a nonprofit alliance of more than 450 member organizations, led the public campaign to double the NIH budget over the past 5 years and conducts telephone polling to ascertain the public's opinion of U.S. investments in science and research. Its goals are to develop a better-informed public, achieve funding for medical and health research, motivate the public to support this research, and empower researchers to participate more actively in public and political outreach. Research!America polling indicates that the public supports basic research and believes that clinical research is valuable and that elimination of health disparities is important. The data also show, however, that most of the public (72 percent) does not know about the NIH.
Ms. Woolley urged the PIOs to familiarize themselves with the poll data (summarized in the handouts she provided and through the Research!America Web site) and to use the data when communicating their messages. When referring to the NIH, for example, PIOs may wish to include clarification that the NIH is the "Federal, taxpayer-funded organization that funds most of the medical research in the United States." In addition, Ms. Woolley suggested that the PIOs "take the Starbucks™ test" (i.e., "Does your congressperson recognize you by sight?") and talked about the 435 Project®, a grassroots effort by researchers and patient advocates to convey the importance of research to their community and congressional leaders.
Among the "tools" employed by Research!America, which could be appropriate for advocating any cause, are the following:
- Take advantage of special advertising opportunities (e.g., February as National Heart Month)
- Research and use powerful quantitative comparisons ("'Cents'ible' Priorities") [e.g., "the $_billion spent annually by Americans for flowers (or chocolate, candy, etc.) would fund research on heart, lung, and blood diseases for _ years"]
- Note that medical research is an important priority for the President and Administration.
In closing, Ms. Woolley urged the PIOs to "take action now" by, for example, writing letters to the editors of local newspapers; calling in to radio talk shows; and, by e-mail or letter, thanking the President of the United States for his commitment to medical research. In discussion, Ms. Woolley encouraged the PIOs to identify and pursue new sources of funding (e.g., from new, high-technology philanthropies) and to contribute their perspectives to the ongoing dialogue at the NIH and the Institute of Medicine about increasing the involvement of patients and the public in clinical trials.