Scientists Can Advance Research By Joining with Patient-Advocacy Groups

Like most Americans who are not scientists, I have been relatively ignorant of how science is conducted and funded until recently. In 1992 I founded a nonprofit organization to help women who have chronic vulvar pain. Directing a grass-roots patient-advocacy organization has brought my attention to the critical lack of funds available for basic research. Although urging scientists to lobby Congress themselves is certainly a reasonable strategy for obtaining more funds, I have a suggestion. Why not join forces with the people who have the most at stake in basic research-those who suffer from disorders whose causes are not fully identified or for which completely effective treatments are not known? In the United States there are literally hundreds of grass-roots patient-advocacy organizations. They represent thousands of people-sometimes hundreds of thousands of people-who suffer from arthritis, cancer, headaches, trigeminal neuralgia, fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome, and more. Many of these people are activists themselves. Successful patient-advocacy organizations develop great expertise in public education and outreach. They tell their stories persuasively. They get articles published in national magazines, regional metropolitan newspapers, professional journals, and popular health newsletters. Some even appear on television talk shows and news programs. Many patient-advocacy organizations also lobby Congress, or at least write letters to their representatives and chairpersons of committees making budget decisions about research funds. Some well-established patient organizations also raise funds for research directly from their members. Thus, they bypass Congress and target their research needs by awarding funds for specific studies to scientists who work directly with them. Scientists and sufferers of disease need to join forces as partners in the search for solutions. If scientists can demonstrate to Congress, or a private funder, the clear need to relieve people from disease, disability, and pain, their pleas will carry more weight. The members of grass-roots organizations can multiply the voices of individual scientists by the thousands, in every congressional district. Irrespective of funding, by joining together, researchers and sufferers of disease can secure benefits for each other. Chief among these are greater information for scientists and empowerment, hope, and relief for sufferers. Since the Vulvar Pain Foundation's establishment in 1992, it has worked with a biomedical scientist, Clive C. Solomons. As a research consultant, he had been approached several years earlier by a psychologist to investigate a client's pain. By working with the problem in the laboratory, he discovered the beginnings of an effective treatment. Dr. Solomons felt it was essential to reach out to large numbers of people actually experiencing the pain to obtain reliable primary data. He needed to join forces with a person skilled in managing a communication network. At the same time, I had formed a burgeoning national network of women desperately in need of more research. We forged a successful partnership that resulted in new, scientifically based treatments that have helped thousands of women. Scientists who are interested in working with a grass-roots patient-advocacy organization have one critical consideration to bear in mind: Most of these groups are frugally funded. When you ask an organization to work with you, ask yourself how you can afford to help it help you expand your research. Consider what is the least expensive way the organization can accomplish what you both need it to do. How can you help? If the grass-roots organization has raw data, but no personnel or technology with which to compile the statistics, can you compile them? If it can provide subjects with a certain disorder for survey data, can you provide the expertise to design and administer the survey? Even though a grass-roots organization probably has many members who would be interested in joining a study, communicating with them about opportunities to participate in research is costly. Can you pay for the photocopying, stationery, postage, and clerical help to accomplish a mailing, pay the telephone bill for the organization to call its members, or subsidize a newsletter in which information is distributed? If you want the executive director of a patient-advocacy group to meet with a member of Congress or a program officer of a private foundation, can you pay his or her travel expenses? Can you go with that person and translate the group's scientific needs to the potential funder? Have you considered combining forces to apply for funds jointly to underwrite the organization's expenses in helping you conduct research? Whether inside or outside the government funding system, there are many opportunities to conduct basic, disease-related research. However, if you ignore the very people who suffer with disease, you overlook a rich source of intrinsic knowledge and persuasive clout. In the competition for resources, you may be able to continue working as a scientist only by joining forces with us. Joanne J. Yount is executive director of the Vulvar Pain Foundation in Graham, N.C. She can be reached online at akrh@aol.com.

Scientists Can Advance Research By Joining with Patient-Advocacy Groups

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