Although we've discussed patientINFORM here many times, the official launch press release didn't come out until today. Excerpt:
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....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.
Comment. Here's how I assessed patientINFORM in January 2005: 'The groups responsible for patientINFORM opposed the NIH public access plan, raising suspicions that the new initiative is designed to support an argument that the NIH plan is unnecessary and that the same needs are being met by the market. Two things are clear, however. (1) Free online high-quality medical information intelligible to lay readers is a good thing. The more, the better. (2) The NIH plan will definitely help lay readers, but its primary rationale is to help researchers who lack access through their institutions because of skyrocketing journal prices. Helping researchers helps everyone, and no amount of medical information restated for lay readers can fill the need for direct access by researchers to the peer-reviewed literature itself.'
Posted by
Peter Suber at 7/06/2005 01:09:00 PM.
The open access movement:
Putting peer-reviewed scientific and scholarly literature
on the internet. Making it available free of charge and
free of most copyright and licensing restrictions.
Removing the barriers to serious research.
