Resource Will Allow Patients Direct Access to Latest Medical Research

Atlanta, GA, and Alexandria, VA — July 6, 2005 — Three of the nation's leading voluntary health organizations have joined a group of scholarly and medical publishers to launch a pilot program to provide patients, caregivers, and the general public direct access to medical research on some of the most serious diseases and medical conditions. The free online information resource called patientINFORM will provide consumers with the ability to read the latest original research articles published in medical and scientific journals, find assistance in interpreting the information and access additional materials on the Web sites of participating voluntary health organizations.

"We hope that connecting patients and others directly to many of the research studies that will have an impact on their treatment will be a valuable addition to the credible, reliable, and comprehensive information we and our health partners are dedicated to giving all Americans," said Harmon J. Eyre, M.D., national chief medical officer of the American Cancer Society. "For years, people have relied on our organizations to understand research findings, and we think patientINFORM will empower what we call 'expert patients' to go the next step, and use direct access to select studies to have a more productive dialogue with their physicians and make well-informed decisions about care."

In its pilot phase, patientINFORM will initially focus on cancer, diabetes, heart disease and stroke through the participation of the American Cancer Society, American Diabetes Association, and in the near future, the American Heart Association. As the resource becomes firmly established, it will expand to include other organizations in these and other areas, including psychiatric, respiratory, neuromuscular, renal, and gastrointestinal disorders, as well as infectious diseases including AIDS and rare genetic disorders.

The creation of this free online information resource has been driven by recent trends indicating that public awareness of clinical research, heightened by media coverage and fueled by the spread of broadband Internet access, has led more and more patients to go online to find the latest information about treatment options. The problem is even well-educated, knowledgeable consumers can find it difficult to fully understand and evaluate scientific findings, and make sound decisions on what they learn.

"The health literacy problem has been called a 'silent epidemic' because many patients are embarrassed or intimidated and do not seek help to understand difficult or complicated information. The result is that a crucial part of their medical care is missing, and so they put their health at risk," said Richard Kahn, Ph.D., chief scientific and medical officer of the American Diabetes Association.

Under the patientINFORM model, patients and their family members, or other concerned individuals, can go directly from the Web sites of the American Cancer Society, American Diabetes Association or American Heart Association to the research article on the publisher's site to learn more about important advances on specific diseases and treatments. Each organization's Web site will provide visitors with links to the full text of selected journal articles, as well as materials created by these groups to help these individuals more fully understand the implications of the research. As gatekeepers of the scholarly content, the voluntary health organizations will be able to interpret the research in ways patients can understand and apply to their own healthcare needs.

While many patient health organizations already provide comprehensive information based on the latest research, the patientINFORM model takes the unprecedented step of including the support of medical and scholarly publishers who make available online access to peer-reviewed medical journals immediately upon publication. "The International Association of Scientific, Technical and Medical (STM) Publishers fully supports this major initiative," said Eric Swanson, Chairman of the STM. The final product is a resource where patients can go to find links to select articles while benefiting from the interpretation of the research provided by trusted patient organizations.

"patientINFORM's motto, Access + Interpretation = Understanding + Empowerment underscores the guiding principle of this initiative," explained Rose Marie Robertson, MD, the chief science officer of the American Heart Association. "The active involvement of three of the most trusted voluntary health organizations in the world will help patients and caregivers understand and act upon the latest research on the diseases and conditions that cause nearly 2 of every 3 deaths, afflicting millions of Americans."

About the American Cancer Society
The American Cancer Society is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. No matter who you are, we can help. Contact us anytime, day or night, for information and support. 1-800-ACS-2345 or www.cancer.org.

The American Diabetes Association
The American Diabetes Association is the nation's leading nonprofit health organization providing diabetes research, information and advocacy. Founded in 1940, the American Diabetes Association conducts programs in all 50 states and the District of Columbia, reaching hundreds of communities. The mission of the Association is to prevent and cure diabetes and to improve the lives of all people affected by diabetes. To fulfill this mission, the American Diabetes Association funds research, publishes scientific findings, provides information and other services to people with diabetes, their families, health professionals and the public. The Association is also actively involved in advocating for scientific research and for the rights of people with diabetes. For more information call 1-800-DIABETES or visit www.diabetes.org.

About the American Heart Association
Since 1924 the American Heart Association has helped protect people of all ages and ethnicities from the ravages of heart disease and stroke. These diseases, the nation's No. 1 and No. 3 killers, claim more than 927,000 American lives a year. The association invested more than $510 million in fiscal year 2003-04 for research, professional and public education, advocacy and community service programs so people across America can live stronger, longer lives. For more information visit www.americanheart.org.

Contacts:

David Sampson
American Cancer Society
(213) 368-8523
david.sampson@cancer.org

Kendra Gutschow
American Diabetes Association
(703) 549-1500 ext. 2146
kgutschow@diabetes.org

Darcy Spitz
American Heart Association
(212) 878-5940
darcy.spitz@heart.org

Susan Spilka
John Wiley & Sons
(201) 748-6147
sspilka@wiley.com