The embryonic consortium formed by the publishers is called "patientINFORM" and among the participants are commercial giants Elsevier, Springer and Wiley plus the American Cancer Society, American Heart Association, American Diabetes Association, and others.
Rick Johnson, the Director of SPARC, and also a member of the Alliance for Taxpayer Access, said, "Every effort to make credible research available to the public is a step in the right direction. However, given the current climate of positive change, this one is too little too late. It emerges from the publishing interests, not the patients, and will add only a select portion of taxpayer-funded research for public consumption. It is ironic that this limited experiment has only now emerged after a majority of public interest and patient advocates already have weighed in to support the NIH enhanced public access program."
Johnson added, "We applaud all authentic efforts to make medical research universally and freely available. The movement toward open access deserves more allies and more leaders. However, the purpose, scope and timing of this development are all questionable at best."
Patient advocate Robert Reinhard, board member of the AIDS Vaccine Advocacy Coalition, said, "This is a troubling proposal. It appears to discriminate among people with different illnesses without justification. It would create a group of those who are 'in' and those with other illnesses who are excluded. In addition, many patients are scientifically savvy. Although well prepared lay explanations are always welcome, the proposal fails to respect all patients' direct right to know or their power to comprehend."
"We worry about any attempts to confuse an overdue outreach effort by journal publishers with enlightened public policy," Johnson added. "This can be a positive move, but it does not begin to approach the public benefit that comes from having an electronic archive of publicly funded research available at the National Library of Medicine. The NIH PubMed Central archive is and remains the gold standard for how to make trusted, taxpayer-supported research accessible to more American families. It is well past time to settle for half-measures and half-hearted and regrettably patronizing attempts."
Johnson concluded, "If patientINFORM is public relations masquerading as good policy, then the public will be the losers. It's clear that the NIH plan is motivated by the public's interests. I'm less certain about patientINFORM."