[open-science] JennyMolloy and PeterMR representing OKF at Open Science Summit

Paweł Szczęsny ps at pawelszczesny.org
Sun Oct 30 21:38:53 UTC 2011

Ok, to comment/summarize/clarify things:

1. Peter mentioned that the statement in question was of political
nature. I think this is very important as it explains couple of
things, especially some disagreements of whether this statement is
"true enough" (more on that below). It also explains my strong
reaction, as I had read it as "scientist-to-scientist" communication,
instead of "activist-to-scientist". It is an important lesson (also
for me) to evaluate assumptions about which mode of communication is
in use at a particular time.

2. It seems we have no enough data to support the scientific statement
"OA saves lives", although we might have enough anecdotal evidence to
back up an equivalent political statement. "Knowledge dissemination
saves lives" is an easy one for a comparison.

3. I can imagine that strong political statement of "OA saves lives"
might be potentially useful in all but "scientist-to-scientist" modes
(at least that's what I understand from some of your emails), however
heavily relying on that might actually undermine actions of those
interested in "more than free" scholarly literature. Two days ago,
attending one of OA Week events, I heard Elsevier executive saying
that they will move to "Universal Access" (equivalent of "free" but
not "open") as soon as data shows it is financially sustainable (so
far hey had ca. 2% level of participation in "author-pays" model). It
is not hard to imagine situation in which large publishers actually
fuel "OA saves lifes" meme, only to "solve" the problem by giving free
access to the literature instead of text-mining-level access. In some
ways it is already happening. For that reason, and considering this
outside of "backed by data" issue, it might not be the best idea to
endorse this statement at all. But that's just an opinion.

4. Jenny asked about sources used by patients making harmful decisions
in Poland. Well, in at least two cases I heard about patients delaying
cancer therapy on the basis of information found in scientific
literature (they came with reprints of articles to a doctor). I hear
it happens more often, but didn't ask for more details. Also, as far
as I know, some pratictioners of EDTA chelation therapy for
cardiovascular disease in Poland are giving patients reprints of a
paper presenting results of one of the earliest (and one of the only
two favourable) randomized controlled trials. These are probably
reasons some physicians here loudly state: "yes to knowledge
dissemination, but no to OA" (controlled lay summaries instead of
work-in-progress in full research papers), however I have no idea how
representative these voices are. The overall scale of the effect of
scientific literature is very hard to quantify here (beyond anecdotal
evidence), because the literature is in English. In English namespace
at least you can get a feeling of a scale: one of the most popular
sites within memespace of "elites are pushing global depopulation by
vaccines, gmo, cancer and diabetes" (and a popular site in general -
within 4000 most visited websites in the world, 19k Facebook likes,
several thousands Tweets pointing to the main site, etc.) cites a few
hundreds PLoS articles (and very few articles from closed access
journals), usually in alarmist tone and in support of the main meme.
Interestingly, the site welcomed open access warmly, as it helps them
to "challenge corrupt medical system", as they say.

Given multiple levels of OA and the fact that OA doesn't have to be an
integral element of knowledge dissemination strategies (a number of
people are arguing about that), choice of PR tactics isn't an easy
one. My personal preferences, however, are to keep the image of the
community as scientific as it is right now, and if there's a need for
more "activist" tone (in a sense of making strong political
statements), the preferred solutions would be to either make it clear
about the type of the message, or fork it outside of the community
(either to some more "radical" group if one is found by Brian, or to
"activist" branch of OKF if there's one).


PS. The collection of links, quotes and source articles summarized by
Jenny should be published in some form (at least a blog post - it's
too valuable to keep it closed inside mailing list). It would improve
"learnability" of the subject, as suggested by Egon Willighagen on
related FF thread.

On Sat, Oct 29, 2011 at 12:50 AM, Jenny Molloy <jcmcoppice12 at gmail.com> wrote:
> Thanks very much Alma. I notice the author advocates the following:
> "If every single biomedical research article were made freely available and
> published under a Creative Commons license, all articles could be collected
> together in a single open access information space. The literature could
> then be seamlessly integrated with important databases, such as gene or
> protein databases, and it could be more easily searched and mined. The
> result would be the discovery of new scientific medical knowledge. We now
> have machines that can scan research papers and find linkages among them
> that no human could have discovered...For this to happen, however, papers
> must be held in an open access repository and not remain hidden behind
> publishers’ authentication systems.”88"
> ORRs aim to provide that single space for the currently available literature
> on a particular disease and eventually semantic tools which could allow the
> kind of searches mentioned above. They won't get there for a while, but
> you've got to start somewhere.
> In addition to the other replies I thought I should also try to address
> Pawel's request for data and hard evidence on the idea that open access
> saves lives, but as you'll see below it's difficult and most organisations
> including those quoted by Brian and Alma use testimonials/anecdotal evidence
> as their main source of support in this.
> Peter's assertion is similar to that made by Healthcare Information For all
> (HIFA2015 http://www.hifa2015.org/ ) whose website leads with 'People are
> dying for lack of knowledge'. This campaign has a community of over 1800
> healthcare organisations (many national/worldwide medical bodies including
> the British Medical Association, Cochrane Collaboration, WHO African
> Regional Office Library - full list
> here http://www.hifa2015.org/support/#supporting-organisations) that are
> happy to endorse the message, although they also admit that there is a lack
> of data to substantiate and quantify that claim:
> "A challenge to advocacy is the limited availability of hard evidence such
> as case studies and other data demonstrating in quantitative terms the
> difference that the effective provision of healthcare information can make
> to health outcomes, quality of care, training or other relevant result"
> (pg.43
> http://www.hifa2015.org/wp-content/uploads/HIFA2015-Evaluation-Report-Final.pdf )
> HIFA focus on information provision at all levels, not just access to the
> primary literature, but the testimonials on their website and personal
> correspondence between those involved in ORRs and the HIFA2015 Coordinator
> Dr Neil Pakenham Walsh indicate that a major element of the global
> healthcare knowledge system is increasing the availability and usability of
> primary research.
> A review on the information needs of healthcare workers in developing
> countries http://www.human-resources-health.com/content/7/1/30 references a
> study:
> To test the hypothesis that there was variation between and within
> developing countries in the proposed management of a patient with hospital
> acquired pneumonia, and that part of the variation can be explained by the
> sources of evidence used
> (http://www.jclinepi.com/article/S0895-4356(99)00231-0/abstract)
> Which I suspect is the kind of evidence you would like to see, but seems to
> be one of the only studies of its kind. The abstract concludes "Textbooks
> were the commonest form of information source, and access to a library,
> textbooks and journals were statistically significantly associated with
> appropriate choice of investigations, but not treatment. Access to local
> antibiotic sensitivities was associated with appropriate initial treatment
> choice. Improving access to information in the literature and to local data
> may increase the practice of evidence-based medicine in the developing
> world."
> Not the strongest support but it's the only peer reviewed publication I
> could find addressing a question of that sort.
> Although we are focusing on open primary research literature and expert
> annotation/summaries of the most highly cited papers via the web form
> generated by David Shotton and Tanya Gray, the next stage would involve
> annotation by the broader health community that would meet the needs of
> specific user groups, including lay summaries and possibly translations
> (which Pawel says would have impact  -
> http://www.pawelszczesny.org/2011/10/25/open-access-means-people-die/). ORRs
> aim to give a framework around which additional layers of functionality can
> be added while maximising the discoverability and usability of the content
> by ensuring that the base is machine readable and semantically searchable .
> How this knowledge becomes accessible to healthcare workers as open
> educational resources, particularly those without access to computers and
> the internet is a considerable challenge, but the primary targets in
> developing countries would be doctors, researchers and students in the first
> instance for whom the primary literature is a direct educational resource.
>> This is very wrong. Majority of maternal mortality rate in Bangladesh
>> (see your last slide) is attributed to child marriage, lack of female
>> education and lack of skilled birth attendants. Access to scholarly
>> literature is absolutely irrelevant in such case. You'd need to
>> improve the standard of living and the quality of education first.
> You are absolutely right that it is not an underlying cause of the majority
> of maternal mortality, but the quality of medical education is vital in
> ensuring that correct maternal care is provided where skilled birth
> attendants are available, which includes access to up to date techniques and
> information, at least to those training midwives and birth attendants.
> Again, there is no hard evidence to be had on this but comments from the
> HIFA network include
> “There is lack of a system to update nurses/midwives in private and public
> practice about the development in Maternal and Child Health were by when
> challenged are not in position to clarify and support safe motherhood. (No
> access to technology, refresher courses, literature, support supervision of
> their facilities etc)”
> David Muwonge, Uganda (October 2008 - Registered nurse, working with Naminya
> community outreach and nursing home)
> There is also a lack of access to literature for medical students, who thus
> may be entering practise with information from out of date text books:
> http://www.hifa2015.org/knowledge-base/healthcare-providers/information-needs-of-health-students-in-low-income-countries/
> ORRs aren't aiming to address any of these wider problems, but may offer a
> resource to reach people who can disseminate that knowledge to primary
> healthcare workers who may not have or desire access to primary papers (we
> are aware that translation from academic literature to practice is a huge
> barrier to the potential effectiveness of increased access but HINARI gives
> a good example with Hepatitis E "The key outreach is done by the Uganda
> Gastroenterology Society...It gathers information from HINARI and transmits
> it to the country through radios, healthcare workers and any person who
> handles blood as they are most exposed to the virus."
> http://www.research4life.org/casestudies_4_aids.html ). While the healthcare
> use case has many challenges that must be overcome, availablility of primary
> literature to researchers has more immediate benefits. Barbara Aronson
> addresses the issue well:
> "Will improved online access have an effect on health in low-income
> countries? It is probably impossible to show a direct connection either
> between the lack of access to information and poor health or between
> improved access to information and improved health. There are many other
> reasons why health in these countries is poor and will not improve quickly.
> These include poor health services infrastructure, poor nutrition, lack of
> clean water, and poor sanitation, as well as war, drought, and political
> corruption. Most global health and medical research remains focused on the
> problems of wealthy nations. But low-income countries also have medical
> schools and universities. They have researchers and research institutes that
> carry out essential work on local problems and government offices that try
> to set effective policies. Warren Stevens of the Medical Research Council
> Laboratories in the Gambia has noted that intellectual isolation represents
> an important hindrance to the development of world-class researchers in
> African countries. Access to timely, relevant, high-quality scientific
> information represents a substantial gain for the researchers, students,
> teachers, and policymakers in low-income countries. Can this be called
> anything but progress?"
> Improving Online Access to Medical Information for Low-Income
> Countries, Barbara Aronson, N Engl J Med 2004; 350:966-968
> Although it can't be concretely backed up with data, the idea that open
> access saves lives is not confined to HIFA, As Brian Glanz pointed out -
> quotes to that effect are not hard to find:
> HINARI has collected case studies of the impact that free access has on
> healthcare and devlopment and 'saving lives', 'improving quality of life'
> are mentioned multiple times:
> http://www.research4life.org/casestudies_2_diarrhea.html (Educating people
> in good hygiene practise)
> http://www.research4life.org/casestudies_4_aids.html (Prescribing correct
> antiretrovirals and monitoring)
> http://www.research4life.org/casestudies_1_watersheds.html (Developing
> filters and storage systems for drinking water)
> During our talk, Peter explained why he feels 'free' is not sufficient and
> open access is better, but easy access at all is the point
> SOROS Open Society Institute had in it's 2006 Annual Report the article:
> Open Access to Scientific Research—Sharing Information, Saving Lives
> They also have case studies of harmful medical decisions being made due to
> lack of access to the full text medical literature
> http://www.soros.org/initiatives/information/focus/access/articles_publications/articles/openaccess_20070419
> Virginia Barbour, Chief Editor of PLoS Medicine states of Springers decision
> to offer free access to E.coli research during the recent outbreak in
> Europe:
> "Springer knows how important open-access publication is - they own Biomed
> Central, a large group of open-access journals. By acknowledging that open
> access to the literature can save perhaps 10s or 100s of lives in this
> outbreak, they surely can't deny that opening access to the entire medical
> and scientific literature has the potential to save many millions of lives."
> (HIFA forum - 3 Jun Press release: Springer offers free access to research
> articles on E. coli bacteria
> http://dgroups.org/ViewDiscussion.aspx?c=e95b885f-14b0-4452-a819-06cf188ee6b0&i=38f192cf-bd2e-4afb-8710-620a538dfb1e)
> Therefore, I'm not sure the general message that open access to biomedical
> literature can save lives, and conversely a lack of it can cause preventable
> deaths through incorrect or outdated treatment is that radical within the
> global health community.
> From: Paweł Szczęsny <ps at pawelszczesny.org>
> Date: 2011/10/27
>>OA (understood as open access to primary literature) is very
>>important, especially in developing countries, but if there's no
>>healthcare infrastructure to apply the cutting-edge knowledge, OA
>>becomes almost irrelevant in the healthcare (while being crucial in
> As above, there is an intersection in health research addressing local
> problems, which one would think could lead to better local policy and
> improved healthcare, although again there is no data to offer. I'm glad you
> brought up the lack of evidence and that others on the list have joined in
> the discussion of how relevant open access is to developing countries,
> hopefully this will be the focus of more research in the near future.
> From: Paweł Szczęsny <ps at pawelszczesny.org>
> Date: 2011/10/27
>>I can supply the same amount of anecdotal evidence showing how access
>>to information is harfmul in case of patients, starting from effects
>>of Wakefield's MMR paper and ending with plenty of stories from local
> Leaving aside developing countries as a use case for ORRs, patient advocates
> who have been consulted on ORRs believe Peter's statement to be the case for
> some diseases in the developed world. There are no doubt also anecdotal
> examples of the opposite, and a separate debate would be the scientific
> literacy of the general population and their ability to interpret the
> literature, but misinformation and poor science reporting by the media is
> far more dangerous than access to the primary literature, which would at
> least give those with the inclination a chance to check the facts and the
> place of findings within the broader field of study. In the case of MMR, the
> paper was closed access and not a single study I've seen suggests that
> parents based decisions on anything in the scientific literature, they were
> listening to the media and, where they trusted them, healthcare
> professionals. This would have been the case regardless of the open or
> closed nature of the publication - the vast majority of the population will
> not access the primary literature even if openly available - but the fact
> remains that some people want to, can make good use of it and there are
> cases where they have, which as Peter mentions he will try to compile with
> the help of patient groups.
> I appreciate your point about the nature of anecdotal evidence, but in the
> cases supporting the idea that open access can save lives, there is a direct
> link between access to the primary literature and changes in clinical
> decisions/treatment being beneficial, or closed access being harmful e.g.
> changing practices innappropriately due to only having access to an abstract
> as in Alma's source
> http://www.hhrjournal.org/index.php/hhr/article/view/20/88 . I'd be
> interested to know if the evidence from doctors that you mention is patients
> making harmful decisions due to information from the media/quack
> websites/other sources of information (as was the case with MMR) or directly
> from the literature.
> Sorry this ended up being so long, it's been a useful exercise :)
> Jenny
> PS BioMedCentral ran their Open Access Africa Conference this week
> (http://www.biomedcentral.com/developingcountries/events/openaccessafrica/program)
> and while the talks aren't up yet, the following could be interesting:
> Importance of open access to case reports:
> Joseph Ana, Mentor of BMJ West Africa edition, Nigeria
> Open access: Meeting the cardiovascular disease information needs of health
> professionals
> Dr. Collins Kokuro, Associate Director, Ashanti-ProCor Project and
> Specialist Physician, Dept. of Internal Medicine, Komfo Anokye Teaching
> Hospital, Kumasi, Ghana
> Access to research and information for health workers
> Victoria Kimotho, AMREF, Kenya
> On Fri, Oct 28, 2011 at 5:29 AM, Alma Swan <a.p.swan at talk21.com> wrote:
>> A substantiated example of how lack of access can have a profound effect
>> is related here: http://www.hhrjournal.org/index.php/hhr/article/view/20/88
>> Alma
>> On 27/10/2011 18:42, "Peter Murray-Rust" <pm286 at cam.ac.uk> wrote:
>> On Thu, Oct 27, 2011 at 5:55 PM, Heather Morrison <hgmorris at sfu.ca> wrote:
>> To help people make the connection between open access and saving lives in
>> the developing, would it help:
>> -       to briefly mention Open Education? perhaps the UNESCO initiative?
>> This related initiative addresses the question of facilitating basic
>> education quite directly.
>> http://www.unesco.org/new/en/communication-and-information/access-to-knowledge/open-educational-resources/
>> -       to speak to south to south and south to north knowledge
>> dissemination? Leslie Chan is one of the experts here, perhaps he can
>> provide some specifics. In brief, as long as the focus is on the knowledge
>> production of the developed world, the needs of the developing world are
>> likely to be short-changed. Lots of research on obesity, little on
>> malnutrition or how to manage food security with little or no $ to work
>> with.
>> This is great Heather,
>> There is actually an immediate urgency (which has suddenly arisen) _ Jenny
>> and I and other have to make a video within 24 hours. (Of course that's not
>> the end of the story). We want to bolt together clips from OSS video with
>> bits of Graham Steel presenting patientsLikeMe and Leslie's clip that Iryna
>> posted. The video will be 5 mins long and present particularly what I and
>> OKF can do NOW so there is a concentration on the December Hackathon. I'll
>> explain the context later.
>> P.
>> my two bits,
>> Heather Morrison
>> Doctoral Candidate, Simon Fraser University School of Communication
>> http://pages.cmns.sfu.ca/heather-morrison/
>> hgmorris at sfu.ca
>> On 2011-10-27, at 9:37 AM, Peter Murray-Rust wrote:
>> >
>> >
>> > 2011/10/27 Iryna Kuchma <iryna.kuchma at eifl.net>
>> > If we are talking about open access to scholarly publications please
>> > believe me that people in universities and research institutions in
>> > developing countries do have computers and internet. this is one of the
>> > examples of a Kenyan researcher speaking about open access: Prof. Mary
>> > Abukutsa-Onyango discusses the importance of open access for research from
>> > Kenya and other African countries (http://vimeo.com/10169351) and I can
>> > share more evidences like this.
>> >
>> > Many thanks for this. The video is exactly what Jenny and I need for a
>> > clip. It's no coincidence that it was created by Leslie Chan who is one of
>> > the group of us who dreamt up Open Research Reports.
>> >
>> > Yes, OA is absolutely critical.
>> >
>> > Best wishes,
>> > Iryna Kuchma
>> > EIFL Open Access programme manager
>> > www.eifl.net <http://www.eifl.net>
>> >
>> >
>> >
>> >
>> > --
>> > Peter Murray-Rust
>> > Reader in Molecular Informatics
>> > Unilever Centre, Dep. Of Chemistry
>> > University of Cambridge
>> > CB2 1EW, UK
>> > +44-1223-763069 <tel:%2B44-1223-763069>
>> > _______________________________________________
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