Transcript 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,

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
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.
www.plos.org
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.
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
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 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.”
www.plos.org
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
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
www.plos.org
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
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
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
www.plos.org
www.plos.org
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.
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!
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
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.”
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
www.plos.org
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
www.plos.org
Things are getting worse:
the “death spiral”
300
Journal
prices
250
200
150
100
CPI/inflation
50
Journals
purchased
19
86
0
-50
Source: Association of Research Libraries
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.
www.plos.org
www.plos.org
www.plos.org
Universities have become
corporate assets for publishers
Derrida warned that universities risk
“becoming a branch office of
conglomerates and corporations”
www.plos.org
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?
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
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 world’s pool of
knowledge
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”
www.plos.org
Impeding global health [4]:
inequality in the global scientific
conservation
• Harder for researchers in the
South to contribute to global
discussions
• 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?
www.plos.org
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;281:1110-1
• Access to abstracts alone is NOT good
enough
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: <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
www.plos.org
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
www.plos.org
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
www.plos.org
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”
www.plos.org
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)
www.plos.org
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”
www.plos.org
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
www.plos.org
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
www.plos.org
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)
www.plos.org
How does open access work at
PLoS?
Publishing
is the final
step in a
research
project
Research Funder
$
Publisher
Reader
www.plos.org
Oct 2003
Oct 2004
The Next
Generation
“Open Access 2.0”
2005: Community
Journals
www.plos.org
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
www.plos.org
www.plos.org
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
www.plos.org
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: postpublication peer review, annotation,
interaction, searching & mining
www.plos.org
OA papers can have enormous
reach, impact, and influence
www.plos.org
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
www.plos.org
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
www.plos.org
Myths about open access
• MYTH: “Not peer reviewed”
• MYTH: “Poor impact factors”
• MYTH: “Excludes poorly funded researchers”
www.plos.org
Who is propagating these myths?
www.plos.org
Once knowledge is truly in the
public domain, the only limit
upon its use is our imagination…
www.plos.org
Creative Uses of PLoS
Materials
www.plos.org
Creating a derivative work from a PLoS
Medicine special issue
www.plos.org
Editors’ summary included in a family
member’s blog
www.plos.org
Article on global epidemic of counterfeit
drugs translated into Spanish
www.plos.org
Neonatal imitation in rhesus macaques
Ferrari et al. PLoS Biol 4(9): e302
www.plos.org
New York Times learning network lesson plan
"Monkey See, Monkey Do" grades 6-8 and 9-12
www.plos.org
Ultrasonic songs of male mice
Holy & Guo. PLoS Biol 3(12): e386
www.plos.org
Sent: Friday, December 09, 2005 8:27 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
www.plos.org
What is open access?
• Free, immediate access online
• Unrestricted use
www.plos.org
What is open access?
• Free, immediate access online
• Unrestricted use
www.plos.org
What is open access?
• Free, immediate access online
• Unrestricted use
www.plos.org
What is open access?
• Free, immediate access online
• Unrestricted use
www.plos.org
A network of literature
Document
www.plos.org
A network of literature and data
Document
Database
www.plos.org
Text mining of full text articles
• The literature is vast
• Machines can be used to
discover previously
unknown information
www.plos.org
Jensen, Saric and Bork Nature Reviews Genetics
Feb 2006
www.plos.org
Text mining and open access
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
www.plos.org
“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.
www.plos.org
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
www.plos.org
• Inclusive
all of science and medicine
• Objective peer-review
focusing on scientific rigor
• Post-publication commentary
interactive, dynamic, open
• Personalization
tailored alerting
www.plos.org
www.plos.org
www.plos.org
www.plos.org
www.plos.org
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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
www.plos.org
Web 2.0 slide from bmj
www.plos.org
www.plos.org
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
www.plos.org
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
www.plos.org
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
www.plos.org
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
www.plos.org
And there is even open source
beer!
www.plos.org
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)
www.plos.org
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
www.plos.org
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)
www.plos.org
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
www.plos.org
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
www.plos.org
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
www.plos.org
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: [email protected]
www.plos.org