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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.

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Presentation on theme: "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."— Presentation transcript:

1 Excluding the poor from accessing the biomedical literature A rights violation that impedes global health March Gavin Yamey MD MA MRCP Senior Editor, PLoS Medicine Consulting Editor, PLoS Neglected Tropical Diseases

2 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.

3 Another depressingly familiar story—from 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.

4 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

5 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 online…Based 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.”

6 The problem Biomedical research results—a treasury of medical knowledge—are 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

7 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

8 What I’d 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

9 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

10 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

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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.

13 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!

14 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

15 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.”

16 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

17 The Wellcome Trust’s 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

18 Journal prices CPI/inflation Journals purchased Things are getting worse: the “death spiral” Source: Association of Research Libraries

19 Not for public consumption Restricted access to research funded by NIH Depression severity and drug injection HIV risk behaviors. Am J Psychiatry. 2003;160: Taste preferences and body weight changes in an obesity-prone population. Am J Clin Nutr. 2004;79: Structure of West Nile virus. Science. 2003;302:248.

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22 Universities have become corporate assets for publishers Derrida warned that universities risk “becoming a branch office of conglomerates and corporations”

23 How are we to ensure the university’s contribution to a fairer world if access to the research it produces about the world is itself a source of inequality?

24 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 :90

25 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 world’s pool of knowledge

26 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”

27 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

28 Impeding global health [5]: the health hazards of abstracts Health professionals are potentially making harmful policy decisions because they don’t 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: Access to abstracts alone is NOT good enough

29 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: <3% articles. Globalization & Health 2006;2:3 ). Why? The model means editors hands are tied They rely on wealthy readers paying, so they must publish materials that appeal to these readers They rely on reprints to drug companies They rely on selling drug ads

30 Access to knowledge is arguably a basic human right The right to knowledge….has a claim on our humanity that stands with other basic rights, whether to life, liberty, justice, or respect

31 UDHR and ICESCR UDHR: Everyone has the right to “share in scientific advancement and its benefits” (article 27, section 1) ICESCR: recognizes the right to “enjoy the benefits of scientific progress & its applications” (article 15, section 1) i.e. the right at issue is not just about the fruits of science (medicines, new strains of rice) but also the right to science as a form of knowledge and understanding

32 The UN has repeatedly framed access to knowledge as a rights issue UNESCO Declaration on Science and the Use of Scientific Knowledge: “Equal access to science is a social and ethical requirement for human development” UN Commissioner for Human Rights, 2003: access to information “forms the necessary condition for the realization of other internationally recognized human rights” UN Special Rapporteur on freedom of opinion and expression, 1995: “freedom will be bereft of all effectiveness if the people have no access to information. Access to information is basic to the democratic way of life”

33 National and regional declarations American, European, and African declarations Declaration of Principles on Freedom of Expression in Africa: Everyone shall have an equal opportunity to access information without discrimination (article I, section 2)

34 Three other rights-based approaches to access Internet Rights Charter  access to knowledge: basis for sustainable human development  “scientific and social research that is produced with the support of public funds should be freely available to all” Medical R&D Treaty  “a new global framework for supporting medical research….which recognizes human rights and the goal of all sharing in the benefits of scientific advancement”  Calls for OA to publicly funded research Geneva Declaration on the Future of WIPO  “concentrated ownership and control of knowledge, technology, biological resources and culture harm development, diversity and democratic institutions”

35 Mutiny and revolution University resolutions urged researchers to take back ownership of their work/cut ties with Big Publishing Over 30,000 researchers signed open letter to publishers Journal editors signed “declaration of independence,” resigned, and launched alternatives Over 10,000 signatories to EC petition

36 What emboldened these rebels? Internet makes it possible to disseminate information at no charge to readers Allows ease of reuse (can transfer a digital file to the entire world in seconds) Producing a PDF does cost money, but this is a relatively small, one-time fixed cost

37 The radical alternative: open access publishing Subscription fees made sense before Internet Printing, binding, and mailing each additional paper copy cost additional amount But what online publishers do has a one time fixed cost (cost of 2 readers = cost of 2000 readers, so why charge all 2000 readers?) Recover this fixed cost up front Publisher is just a service provider (like a midwife)

38 Research Funder Publisher Reader $ How does open access work at PLoS? Publishing is the final step in a research project

39 Oct 2003 Oct 2004 The Next Generation “Open Access 2.0” 2005: Community Journals

40 What is open access? Free, unrestricted online access Users are licensed to download, print, copy, redistribute, and create derivative works (CC Attribution License) Author retains the copyright (not the publisher), i.e. right to be credited Papers are deposited immediately in a public database that allows sophisticated searches

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42 Using the CC license for journal articles “copyright can be used for what it is meant to in science, not to make the articles artificially scarce….but instead, to ensure that their potential for maximum possible dissemination can be realized” Jan Velterop, Director of OA, Springer

43 Benefits of open access No longer will physicians and policymakers have to base their work on the half truths of abstracts For authors, reach and impact of work For editors, free of space constraints, can offer greater range of articles For health/science community: post- publication peer review, annotation, interaction, searching & mining

44 OA papers can have enormous reach, impact, and influence

45 Paper on “rapid impact” package resulted in….. A UN mandate to incorporate neglected tropical diseases into malaria control A UK parliamentary question by MP Nicholas Soames on behalf of Sightsavers Establishment of the GNNTDC (led by the PLoS Medicine authors) A USAID grant of $100m for integrated control of NTDs (grant given to PLoS Med authors) Gates Foundation grant of $1.1m to launch PLoS Neglected Tropical Diseases

46 Profound benefits to the public Patients and health organizations seeking reliable information Teachers looking for classroom materials Journalists investigating health stories Lawyers, policymakers, activists searching for empirical studies that could inform their work on promoting human rights or protecting the environment

47 Myths about open access MYTH: “Not peer reviewed” MYTH: “Poor impact factors” MYTH: “Excludes poorly funded researchers”

48 Who is propagating these myths?

49 Once knowledge is truly in the public domain, the only limit upon its use is our imagination…

50 Creative Uses of PLoS Materials

51 Creating a derivative work from a PLoS Medicine special issue

52 Editors’ summary included in a family member’s blog

53 Article on global epidemic of counterfeit drugs translated into Spanish

54 Neonatal imitation in rhesus macaques Ferrari et al. PLoS Biol 4(9): e302

55 New York Times learning network lesson plan "Monkey See, Monkey Do""Monkey See, Monkey Do" grades 6-8 and 9-12

56 Ultrasonic songs of male mice Holy & Guo. PLoS Biol 3(12): e386

57 Sent: Friday, December 09, :27 PM To: PLoS Subject: Thank you Dear Public Library of Science people, I just listened to a mouse song on line… and I wanted to tell you how grateful I am for your journal. I am a middle school science teacher. I do not have the funds to subscribe to the traditional science journals. Tomorrow my students will hear the same mouse song I listened to and I am sure they will be as enchanted and interested as I am. The idea of open access to original research papers is very exciting to someone in my position… I can assure you that the availability of research papers will benefit the future of scientific research by providing motivation and stimulation for millions of fledgling scientists. Sincerely, Science Teacher

58 What is open access? Free, immediate access online Unrestricted use

59 What is open access? Free, immediate access online Unrestricted use

60 What is open access? Free, immediate access online Unrestricted use

61 What is open access? Free, immediate access online Unrestricted use

62 A network of literature Document

63 A network of literature and data Document Database

64 Text mining of full text articles The literature is vast Machines can be used to discover previously unknown information

65 Jensen, Saric and Bork Nature Reviews Genetics Feb 2006

66 So far, more that 90% of all biomedical literature mining has been based on Medline, mainly because it is freely available in a convenient format. However, it is restricted access to the full text of papers…that is currently the greatest limitation… Jensen, Saric and Bork Nature Reviews Genetics Feb 2006 Text mining and open access

67 “Open access 2.0” The next generation of PLoS journals PLoS Clinical Trials provides an unbiased, peer-reviewed venue for clinical trials results in all fields of medicine and public health. The journal aims to increase the breadth, depth, and transparency of clinical trials reporting.

68 What would the ideal scientific research journal look like? All articles open access: free to read, free to use Data deposited alongside the paper Full integration between articles and other resources (e.g. gene databases) Multiple levels of peer review, especially community comment and annotation Search results tailored to individual user profiles “This vast network of information would be interrelated, linked and accessed via a single seamless portal” Seringhaus R, Gerstein MB. Publishing perishing? Toward’s tomorrow’s information architecture. BMC Bioinformatics 2007;8:17

69 Inclusive all of science and medicine Objective peer-review focusing on scientific rigor Post-publication commentary interactive, dynamic, open Personalization tailored alerting

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77 Community Portals Specific communities (e.g. leprosy researchers) can use the articles as a starting point for creating a portal PLoS LEPROSY COMMUNITY PORTAL Add own secondary materials e.g. commentaries Link to other relevant content (maps, books, educational videos) Bulletin boards Annotations Job notices, wikis Adding own datasets, cases, blogs

78 Web 2.0 slide from bmj

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80 PLoS is part of the “knowledge commons” movement A crucial mechanism for improving human welfare is expanding the “knowledge commons” (a body of knowledge, globally shared, in the public domain) Health workers and policy makers Managing environment Agricultural production

81 Knowledge: the perfect public good “He who receives an idea from me, receives instruction himself without lessening mine; as he who lites his taper at mine, receives light without darkening me” Thomas Jefferson

82 The power of the knowledge commons The knowledge commons “offers a way not only of responding to the challenge posed by enclosure, but also of building a fundamental institution for twenty-first century democracy” –Nancy Kranich, past president ALA

83 Many inspiring examples… Drugs for Neglected Diseases Initiative Global Biodiversity Information Facility Conservation Commons Science Commons: “to remove unnecessary obstacles to scientific collaboration by creating voluntary legal regimes for research and development” GenBank Econ-Port

84 And there is even open source beer!

85 Towards a health and human rights commons Health and Human Rights transitioning to an OA journal could help catalyze “a HHR commons” Unfettered access to data, case reports, blogs from the field, debates, discussions Web-based crawler that monitors health and human rights violations? (David Gordon)

86 So let’s now expand the pool of knowledge that is publicly available…. UN: formally endorses OA as a global health and development tool Over 130 science/health organizations have signed the Berlin Declaration calling for OA NIH, Wellcome Trust, other funders

87 The Federal Research Public Access Act Act would require that US govt. agencies with annual extramural research expenditures of over $US 100 million make journal articles stemming from research funded by that agency publicly available via the Internet Strong support from patients, scientists, physicians, research funding agencies HUGE RESISTANCE from Big Publishing & a few society publishers (e.g. APS, AAA)

88 Grassroots activists were rather ashamed of the AAA’s actions… “The AAA’s attempts to horde anthropological scholarship is bad enough, since this research is often very important for human rights activists and development. But by opposing FRPAA, the AAA is also working against the dissemination of vital knowledge in other disciplines that directly impact health, conservation, and economic development. That makes this whole affair sordid, ironic, and even somewhat tragic, especially for a discipline that positions itself in advocacy on behalf of marginalized peoples and communities” Eric Kansa, Executive Director, Alexandria Archive Institute

89 Is it ethical to publish in closed access journals? “Faced with the option of submitting to an open-access or closed-access journal, we now wonder whether it is ethical for us to opt for closed access….” Lancet 364:25-26 Anthony Costello & David Osrin, Institute of Child Health, London

90 Removing access barriers to the literature will accelerate research, enrich education, share the learning of the rich with the poor and the poor with the rich, make this literature as useful as it could be, and lay the foundation for uniting humanity in a common intellectual conversation and quest for knowledge

91 There are many, many global inequalities in medicine, science, and health care. Access to the latest peer-reviewed research results doesn’t have to be one of them. Work with us. Gavin Yamey:


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