Voluntary Health Organizations: Publishers Announce Major Information Initiative

Service Will Allow Patients Direct Access to Latest Research

Scientific publishers and the nation’s leading voluntary health organizations have announced a groundbreaking initiative to help patients and caregivers close a critical information gap.

Scheduled to launch as a pilot project in Spring 2005, patientINFORM (www.patientinform.org) is a free, online service dedicated to disseminating original medical research directly to consumers. A collaborative effort of leading voluntary health organizations, scholarly and medical publishers, medical societies, and information professionals, patientINFORM will provide patients and their caregivers with online access to up-to-date, reliable research for specific diseases. Participating voluntary health organizations will integrate the information into materials created for patients and link to free full-text research articles and additional selected material on journal websites.

“Not only will patientINFORM connect patients and their caregivers with the latest research, it will help them to put it into context. By making it easier to understand research findings, patientINFORM will empower patients to have a more productive dialogue with their physicians and make well-informed decisions about care,” said Harmon J. Eyre, M.D., national chief medical officer of the American Cancer Society.

patientINFORM will initially focus on three diseases, cancer, diabetes, and heart disease, through the participation of three voluntary health organizations: The American Cancer Society (ACS), the American Diabetes Association (ADA), and American Heart Association (AHA); more than 20 publishers (see attached list); the International Association of STM Publishers; the Association of American Publishers/Professional & Scholarly Publishers; the Welch Medical Library at The Johns Hopkins University, and MedLinePlus (part of the National Institutes of Health’s National Library of Medicine).

This groundbreaking initiative is being driven by recent trends indicating that public awareness of clinical research, heightened by media coverage and fueled by the spread of broadband Internet, has led more and more patients to go online to find the latest information about treatment options. Still, even many knowledgeable consumers can find it difficult to fully understand, evaluate, and make sound decisions based on what they learn from their Internet research.

“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 web-based pilot project, when patients, their caregivers, or others visit the voluntary health organization websites with general questions and to read news stories and other web content created by the organizations to help interpret the latest research, they will also have the option of being connected directly to the source through links to free full text of the research articles on the journal websites. Healthcare consumers will be able to access selected journal articles as soon as they are published. Each health organization’s website will be listed on www.patientinform.org (see note attached).

Later phases of patientINFORM will extend services to cover a wider range of medical conditions and draw upon the offerings of a broader group of publishers.

“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 the three largest and 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 afflict millions of Americans.”

Participating publishers will provide the voluntary health organizations with increased online access to their peer-reviewed biomedical journals immediately upon publication. Content from back issues of scholarly journals will also be available to the groups, broadening access to include a vast array of research articles. The groups will be able to search the most current American, European, and other international research to help them identify relevant advances on specific diseases and treatments which they will then be able to pass on to patients.

patientInform will help patients and caregivers world-wide, including many European consumers, with access to important medical research. Those organizations involved with patientInform include European publishers and associations such as the British Medical Journal Publishing Group, Blackwell Publishing, Elsevier, Nature Publishing Group, and the International Association of STM Publishers.