December will mark the 60th anniversary of the Universal Declaration of Human Rights, a United Nations convention that in 30 articles memorializes basic freedoms involving speech, property, health, security, and the rule of law.
Today, a group of Harvard-affiliated health practitioners want to add another basic right: free access to health information, a step they say will save lives and more democratically communicate an emerging wealth of scientific knowledge.
To that end, the journal Health and Human Rights (HHR) this month published its first open-access edition. Volume 10, issue 1, will still appear in print, and is still published by the François-Xavier Bagnoud Center for Health and Human Rights (FXB Center) at the Harvard School of Public Health.
But HHR has a new editor-in-chief, Paul Farmer, the Maude and Lillian Presley Professor of Social Medicine at Harvard Medical School and founding director of Partners In Health, an international direct-care charity.
HHR’s new full-text, open-access format was discussed by Farmer and others in a public panel last week (Sept. 17). The event drew a capacity crowd to the American Repertory Theatre’s Loeb Stage.
“The focus is not just to write for each other,” said FXB Center Director and HHR publisher Jim Yong Kim, “but to develop a robust community of practice.”
He called the journal’s open-access format “health and human rights in the doing.”
HHR is free to anyone with a computer, and so “aligns itself with a global movement for the democratization of scientific knowledge production,” said an HHR editor’s note co-written by Farmer.
“The right to health cannot be separate from the right to information,” agreed panelist Agnès Binagwaho, a pediatrician who runs Rwanda’s National AIDS Control Commission.
HHR was previously available only in print, and only by subscription. But now that it is online and free, the journal becomes a more powerful tool for reflection, education, and innovation, she said.
The Internet offers speed and efficiencies that print cannot, said Binagwaho, who used to cram her suitcases with medical literature on the way back from trips to the West, up to the airline’s limit of 20 kilos. “But how much knowledge is in 20 kilos?” she asked.
Binagwaho said combining open-access medical journals with Web-based, interactive systems for knowledge sharing — like the PIH Model Online (http://model.pih.org/) — “will dramatically improve global health.”
British-trained physician and health journalist Gavin Yamey, senior editor at the San Francisco-based PLoS Medicine, believes that biomedical literature — in Kim’s words — should be “a freely available public good.” (“PLoS” stands for Public Library of Science.)
Yamey wrote an argument for open-access medical literature in the latest issue of HHR.
Adding an open-access format to HHR, said Yamey during the panel, gives public health “a human rights dimension.”
Print-only, subscription-only medical journals reduce “life-saving access to information,” he said, by being too expensive and too slow to help practitioners in developing countries.
About 5,000 biomedical journals worldwide make summaries of articles available for free, said Yamey — but studies show that 70 percent of the summaries are incorrect. In any event, they are no substitute for the full text, he said, which may cost readers $50 per article.
To underline the crisis, only four companies in the world publish (and own) most of the medical literature, said Yamey. “It’s like an intellectual land grab, and it makes me nervous.”
Medical research is commonly published in printed journals paid for by subscription. That means “only a tiny fraction of the audience can benefit,” said Yamey. “The logical alternative is to use the Internet.”
The Internet could free biomedical knowledge from political and economic barriers, he said, and have “profound benefit to the global health community.”
The United Nations (in the 1948 Universal Declaration) has already identified access to knowledge “as a rights issue,” said Yamey, and “basic to the democratic way of life.”
Putting medical knowledge online for free is one benefit, he said. But the Internet “also allows you to do tacitly creative things,” including participating in interactive features that bring readers into discussions of scholarship and practice.
Kim agreed. In an HHR publisher’s note, he averred that the journal would make readers “more than readers.” The new electronic version offers discussion threads, blog postings, and contributions from field practitioners.
The open-access model is flexible, fast, and information-rich, said Yamey. “Readers love it.”