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

Jenny Molloy jcmcoppice12 at gmail.com
Fri Oct 28 23:50:00 BST 2011


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"<http://www.hhrjournal.org/index.php/hhr/article/viewArticle/20/88#refs9>
*
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
>research).

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
>doctors.

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
. <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>
> > _______________________________________________
> > open-science mailing list
> > open-science at lists.okfn.org
> > http://lists.okfn.org/mailman/listinfo/open-science
>
>
>
>
>
>
>
> _______________________________________________
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