by Adriana Benedict
In December, I wrote a blog post noting that access to biomedical research is critical not only for informed patient care, but also for the sustainable development of pharmaceutical R&D responsive to local needs, especially in developing countries. In recent years, open access issues have taken on an increasingly important role in global health discussions. In 2009, the Institute for Information Law and Policy, the Justice Action Center and Health Information for All 2015 made the case for a rights-based approach to the issue in a report called Access to Health Information under International Human Rights Law. In 2011, a medical student in the Right to Research Coalition explained 6 Reasons Open Access Matters to the Medical Community. And the 2012 WHO CEWG Report recommending a binding treaty on Research and Development to Meet the Needs of Developing Countries includes as one of its proposals “open approaches to research and development and innovation which include precompetitive research and development platforms, open source and open access schemes.”
In response to the increasing demand for open access to biomedical research, PLOS Medicine partnered with WHO to issue a call for papers “intended to culminate in an open-access collection of original research and commentary articles to coincide with the launch … [of] World Health Report 2012: No Health without Research.” However, the 2012 World Health Report was unexpectedly called off to be replaced by a 2013 report on “contributions to research to universal health coverage,” a far less politically polarizing topic. In its editorial response to the cancellation of the 2012 Report, PLOS Medicine noted that “The reasons for these delays and for the changes in scope of WHO’s flagship publication, are unclear,” not in the least because “Previous World Health Reports … have represented bold political statements.”
While PLOS Medicine has maintained a webpage featuring articles that were submitted in answer to its call for papers, the literature on the relationship between access to biomedical research and access to medicines remains sparse. Below, I’ve compiled a few noteworthy article excerpts that use powerful anecdotes to demonstrate the ties between open access to research and access to medicines and healthcare. Additional anecdotes and references are welcome.
Sea Change or Change Challenge? Health Information Access in Developing Countries – “In 1992, a small satellite in a low earth orbit quietly delivered the first electronic version of a medical journal article in sub-Saharan Africa. Published in the New England Journal of Medicine, the article concluded that ‘treatment with vitamin A reduces morbidity and mortality in measles, and all children with severe measles ‘should be given vitamin A supplements’. At the time, measles persisted as a common killer of children in developing countries and vitamin A was readily available almost everywhere. Results of this research, carried out in Africa, had not reached African doctors who could have used it to save lives.”
The Impact of Open Access upon Public Health – “Arthur Amman, President of Global Strategies for HIV Prevention, tells this story: ‘I recently met a physician from southern Africa, engaged in perinatal HIV prevention, whose primary access to information was abstracts posted on the Internet. Based on a single abstract, they had altered their perinatal HIV prevention program from an effective therapy to one with lesser efficacy. Had they read the full text article they would have undoubtedly realized that the study results were based on short-term follow-up, a small pivotal group, incomplete data, and unlikely to be applicable to their country situation. Their decision to alter treatment based solely on the abstract’s conclusions may have resulted in increased perinatal HIV transmission.’”
Open Access Can Save Lives – “This year a high-school student in Maryland announced that he had invented a diagnostic test for pancreatic cancer. The test costs three cents per use. It works 168 times as fast and more than 400 times as accurately as the best previously existing test. It also may be able to detect ovarian and lung cancers. Jack Andraka, the inventor, is 15 years old. His cancer test is more than a medical triumph. It is also a triumph for open access, the goal of a decade-old movement to replace an obsolete and inefficient scholarly publication industry with something better for everybody: a system that allows anyone with a computer and an Internet connection free access to results of academic and scientific research—most of it paid for by taxpayers.”