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www.plos.org Excluding the poor from accessing the biomedical literature A rights violation that impedes global health March 14 2007 Gavin Yamey MD MA MRCP Senior Editor, PLoS Medicine Consulting Editor, PLoS Neglected Tropical Diseases Slide 2 www.plos.org A depressingly familiar story from Indonesia A group of junior doctors goes online to search the literature Most articles are only available as pay per view or via subscription The current medical publishing system bars them from access Ham MF et al. Open-access publishing. Lancet. 2004;364:24-5. Slide 3 www.plos.org Another depressingly familiar storyfrom Africa The WHO asks James Tumwine to investigate an outbreak of nodding disease in Sudan Literature review: access denied Yamey G. Africa's visionary editor. BMJ, Oct 2003; 327: 832. Slide 4 www.plos.org Yet another depressingly familiar story The director of the world's largest medical research charity receives notification from one of his funded investigators in Africa reporting exciting progress toward the development of a malaria vaccine The work has just been published, so he goes online: Access Denied Slide 5 www.plos.org Perhaps the most depressing story of all.. I met a physician from SA, engaged in preventing mother-to-child HIV transmission, whose primary access to information was abstracts onlineBased on a single abstract, they had altered their perinatal HIV prevention program from an effective therapy to one with lesser efficacy Their decision to alter treatment based solely on the abstract's conclusions may have resulted in increased perinatal HIV transmission. Slide 6 www.plos.org The problem Biomedical research resultsa treasury of medical knowledgeare privately owned and sold only to those who can afford it Publishers make HUGE profits by restricting access I believe medical research results should be considered a global public good (most is funded by the public) Access to this knowledge: a global public health crisis Slide 7 www.plos.org The solution: make all research results freely available online It is now possible to share the results of medical research with anyone, anywhere, who could benefit from it. How could we not do it? Harold Varmus, Nobel Laureate, PLoS Co-founder Slide 8 www.plos.org What Id like to talk about today The current medical/scientific publishing system Why that system is broken and unsustainable How the system impedes scientific progress/global public health and violates human rights Open access publishing: a healthier alternative Slide 9 www.plos.org The private ownership of research results You write the research paper You give your work to publishers, you hand over copyright to them, they then sell it to wealthy readers A high profile drug trial can earn a journal $1m in reprint sales The work is subject to extremely tight copyright restrictions Slide 10 www.plos.org Medical & scientific publishing is big business Worth $9-11 billion/year Reed Elsevier (market leader): profits of $290m/yr Massachusetts Medical Society: listed $US 88 million in total publishing revenue for yr ending May 31, 2005 Fastest growing sub-sector of the media industry for the past 15 years Slide 11 www.plos.org Slide 12 Reprint sales: major cash cow The NEJM sold 929,400 reprints of the Vioxx trial (most to Merck) More than one for every doctor in the US Brought in between US$697,000 and US$836,000 for the Journal. Slide 13 www.plos.org Copyright is used to protect profits Traditional publishers demand that authors give up ownership of their work Publishers sued copy shops for including copies of research articles in student course-packs without paying royalties to the publisher These articles were being used for educational purposes! Slide 14 www.plos.org Research results: privatized and monopolized Just 3 companies (Elsevier, Taylor & Francis, Springer) own 60% of the biomedical research articles indexed in the ISI Web of Science Huge multinational corporations have bought smaller firms price rises Aggressive lobbying for tighter copyright restrictions Slide 15 www.plos.org Information arms race Hess and Ostrom: corporations are battling for larger and larger shares of the global knowledge pool Leads to speculation that the records of scholarly communication, the foundations of an informed, democratic society, may be at risk. Slide 16 www.plos.org Who gets to see the research results? Results of billions of dollars of research funding (NIH: $28bn in 2004) may be seen by only a small fraction of the intended audience, because it is published in journals that few individuals or institutions can afford to subscribe to. Annual subscription to Brain Research costs $21,269 Slide 17 www.plos.org The Wellcome Trusts position The publishing of scientific research does not operate in the interests of scientists and the public, but is instead dominated by a commercial market intent on improving its market position Slide 18 www.plos.org Journal prices CPI/inflation Journals purchased Things are getting worse: the death spiral Source: Association of Research Libraries Slide 19 www.plos.org Not for public consumption Restricted access to research funded by NIH Depression severity and drug injection HIV risk behaviors. Am J Psychiatry. 2003;160:1659-62 Taste preferences and body weight changes in an obesity-prone population. Am J Clin Nutr. 2004;79:372-8. Structure of West Nile virus. Science. 2003;302:248. Slide 20 www.plos.org Slide 21 Slide 22 Universities have become corporate assets for publishers Derrida warned that universities risk becoming a branch office of conglomerates and corporations Slide 23 www.plos.org How are we to ensure the universitys contribution to a fairer world if access to the research it produces about the world is itself a source of inequality? Slide 24 www.plos.org Impeding global health [1]: health workers are starved of reliable information Providing access to reliable health information for health workers in developing countries is potentially the single most cost effective and achievable strategy for sustainable improvement in health care Packenham-Walsh et al BMJ 1997 314:90 Slide 25 www.plos.org Impeding global health [2]: hinders health system strengthening Developing countries are poorer not because they have fewer resources but because there is a gap in knowledge These countries stand ready to convert knowledge into goods and services, including public health systems Need greater access to the worlds pool of knowledge Slide 26 www.plos.org Impeding global health [3]: impedes health research Health research: crucial tool in growth and development of people/nations Exclusion from the literature is one of the reasons for the lack of research capacity in many countries 1969 UN Report: if the vicious circle of underdevelopment is to be overcome, an indigenous scientific capability must be fostered, which means overcoming the highly imperfect access to the body of world scientific knowledge Slide 27 www.plos.org Impeding global health [4]: inequality in the global scientific conservation By excluding, say, African physicians from accessing the latest studies on PMTC, how can such physicians come to the table as equals in global policy discussions and debates? Harder for researchers in the South to contribute to global discussions Slide 28 www.plos.org Impeding global health [5]: the health hazards of abstracts Health professionals are potentially making harmful policy decisions because they dont have all the information they need! Pitkin et al: found that abstracts in 6 major medical journals (NEJM, JAMA, BMJ, Lancet, Annals, CMAJ) were inaccurate in 18%-68% articles JAMA 1999;281:1110-1 Access to abstracts alone is NOT good enough Slide 29 www.plos.org Impeding global health [6]: journals neglect health problems of the poor Subscription based journals traditionally devote little space to covering health issues of developing world (e.g. NEJM: