patientINFORM Cited as Example of Innovative Way to Provide Medical Research Studies to Patients

WASHINGTON, D.C., Feb. 16, 2006 - Representatives Paul Gillmor (R-OH) and Diana DeGette (D-CO) were joined today by leading health organizations and medical publishers to draw attention to the health literacy crisis in the U.S., as well as new methods for providing easier public access to medical information and research.

“Health literacy, or the ability of individuals to access, understand and use health-related information and services to make appropriate health decisions, is one of the most important issues facing America’s healthcare system today,” said U.S. Surgeon General Dr. Richard Carmona, in taped remarks for a health literacy briefing today hosted by Reps. Gillmor and DeGette. “All of us—government, academia, healthcare professionals, biomedical journal publishers, communities and consumers—working together can bridge the gap between what health professionals know and what patients understand, and thereby improve the health of all Americans.”

According to the Institute of Medicine Report on health literacy, 90 million people have difficulty understanding and using health information. patientINFORM, a free online resource to help educate and empower healthcare consumers with the latest research findings on certain diseases and ailments, was highlighted as an example of one collaborative effort. Participants in patientINFORM include the American Cancer Society, the American Diabetes Association, the American Heart Association, the National Organization for Rare Disorders (NORD), the ALS Association (ALSA), health information professionals and scholarly and medical publishers.

Deputy Surgeon General Dr. Ken Moritsugu said his agency is working to find the best ways to improve health literacy in America. “They include high tech information distribution methods like interactive programs and the internet to proven low-tech, high touch methods like peer-to-peer education,” he said. “patientINFORM fits nicely into the category of a high tech answer, providing people information and answers to their health related questions about disease and treatments. patientINFORM also fits into the recommendations of Healthy People 2010, which is HHS’ ‘road map’ for the nation’s health. Among the activities included to improve health literacy are building a robust health information system that provides equitable access.”

“As part of patientINFORM, health organizations are striving to eliminate the barrier of intimidation for patients when addressing medical information,” said Peter Banks, publisher, American Diabetes Association. “This resource allows patients and those closest to them to access relevant research articles regarding diseases and treatments directly through the Web sites of the American Cancer Society, the American Diabetes Association and the American Heart Association. A unique feature of the resources is the added content that helps explain the articles, making them more understandable and meaningful to consumers.”

“We are pleased to see this collaboration making so much critical information available free-of-charge to consumers over the Internet,” said Gillmor. “Through patientINFORM, patients can be better consumers of healthcare, which will lead to improvement in their health. The patient INFORM concept should be especially helpful to sprawling congressional districts such as my own in Northwest Ohio, in which patients must drive, or be driven by friends and family, long distances for basic medical education, care and services.”

“Scientific research has never been more accessible than it is today. Yet, people still do not know enough about their own health, disease and treatments," said DeGette. "The medical publishing industry has tried to address this need by making material more readily accessible. PatientINFORM is another example of this commitment. By joining with voluntary health organizations that have a long history of communicating information to consumers - they have created a new platform for disseminating information and are helping improve health literacy in America."

“The patientINFORM project is our attempt to do what we can as publishers to aid the effort to help improve health literacy in America,” said Brian Crawford, Ph.D., incoming chairman of the American Association of Publishers/Professional Scholarly Publishing Division and senior vice president of the American Chemical Society. “If we are to improve the health of all Americans, people need to better understand our health care system, the impact of disease, treatments and what we can and should do to keep ourselves healthy. patientINFORM is just one small step in this broader campaign and we are proud to be a part of the effort.”

In addition to the American Cancer Society, the American Diabetes Association, the American Heart Association, the National Organization for Rare Disorders (NORD), and the ALS Association (ALSA), patient INFORM is supported by more than 20 publishers including: the American Association for the Advancement of Science; American Association for Cancer Research; American Physiological Association; American Roentgen Ray Society; American Society of Hematology; American College of Physicians (Annals of Internal Medicine); Blackwell Publishing; BMJ Publishing Group Ltd; Elsevier; The Endocrine Society, Massachusetts Medical Society (New England Journal of Medicine); Nature Publishing Group; Oxford University Press; Proceedings of the National Academy of Sciences; Society of Nuclear Medicine; Springer; Taylor and Francis; Thieme Publishing Group; John Wiley & Sons, Inc.; and Wolters Kluwer Health. Other participating and collaborative partners include the International Association of Scientific Technical and Medical Publishers, Association of American Publishers/Professional & Scholarly Publishers, HireWire Press, Cross Ref and the Welch Medical Library at Johns Hopkins University.