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Thank you, Amy. I sincerely appreciate your response. It never occurred to
me that there was a tone that was admonishing the volunteers. Even when
everything is explained in the fine print... who reads the fine print?
Personally, I don't think anyone has done anything "bad" or ethically
questionable here. Embase, Cochrane, and TRIP are all sources that require
paid subscriptions for full access. Open Access and paywalls are
complicated issues that require good questions and rational discussion.

Peace,

Susan

On Mon, May 9, 2016 at 1:08 PM, healingjia Price <[log in to unmask]> wrote:

>
> Dear all,
>
> I am really concerned about the impact of this discussion on the PI(s)
>  of the EMBASE project. The assumption is they must prove they were
> not ethically negligent (guilty until proved innocent) In this mindset the
> damage is already done. In their place I would feel discouraged and
> mortified. They in no way deserve this. Did anyone even contact them
> privately with this concern and offer assistance or if there was a gap try
> to help or do we just eat our own?
>
>  Would we like to be put in this position with those who we admire,
> respect and count as peers? They are not some junk scientist out for profit
> at any cost. They are  genuine fellow early career researchers who do their
> utmost to respect and include the public in ways no one else has managed to
> do so and on a limited budget. I respect and admire them and I am thankful
> for what they have done.
>
> I hope they will be able to  publish an open access methods paper with
> what they have learned.
>
> No research is perfect and even where there is room for improvement at
> least they stepped up to the challenge did their best and gave it their
> all. I would be honored to work side by side with them. Please see my
> responses below:
>
>
> From: "[log in to unmask]" <
> [log in to unmask]> on behalf of Ben Goldacre <
> [log in to unmask]>
> Reply-To: Ben Goldacre <[log in to unmask]>
> Date: Monday, May 9, 2016 at 9:50 AM
> To: "[log in to unmask]" <
> [log in to unmask]>
> Subject: Re: Cochrane's EMBASE screening project - did you participate?
>
> Cochrane needs to be sustainable, that's in everyone's interests.
>
> The questions are:
>
> 1. Cochrane is trying to monetise the underlying data collected by
> individual researchers and now members of the public (as well as the
> published reviews): are the benefits of this greater than the harms?
>
> Yes.  They have done more than most and in an excellent quality way to
> build an informed public. Cochrane needs several million per year to
> function, no one has stepped up to the plate  as in Wellcome NIHR etc so
> they are doing what they need to do to sustain the quality of their support
> and be sustainable. Just  using volunteers does not make everything
> free, in fact sometimes it increases costs.
>
> 2. Were members of the public participating in the crowdsourcing project
> told that their time and effort would create a paywalled commercial dataset
> that is not shared?
> Yes, I worked in a peripheral way as a volunteer only on multiple projects
> and this was quite clear and well explained by the EMBASE PI who did share
> that although people in UK have access through NICE in some countries it is
> paywalled but that they have plans to be all open access by 2020.
>
> The latter is a consent issue, and also raises broader concerns, because
> generally that kind of crowdsourcing information effort is to produce an
> open data resource for public good, eg Wikipedia and more.
> Even Wikipedia selectively shares data and algorithms. Peace Corps, WHO,
> CDC and World Bank don’t make all data open access  either  even when
> volunteers have worked on it. Open access is an interesting word that is
> not clearly standardized perhaps this is something to work on. I agree with
> Susan in that nothing is free and from my perspective Open Access is for
> those that can afford it and creates a barrier to clinicians and early
> career researchers, it is definitely a double edged sword. I think this is
> not all for the public good as it creates an us and them dichotomy with
> Open Access bullying. People are shamed on social media even when they make
> works available in a repository if they published research in a
> paywalled journal because author processing fees were out of there reach.
> We need to look at all the concerns. Most of the largest crowdsourcing
> platforms do not make all the data open access and they do not pay patients
> for use of the data or make it available for patients either. It is
> generally spelled out in terms and conditions on their sites. If patient
> input is going to be valued  in trials design for investigative new drugs,
> commercial ventures etc does this mean they should have the rights to the
> drug it costs others to develop? Data is also a commodity.
>
> What were the participants told? I can't see anything on the site telling
> them that their crowdsourcing work would produce a private resource:
> Most consents are not publicly displayed they are in internal documents
> signed by participants in a secure database. Often they are taken offline
>  to limit exposure to the volunteers.
> I may have missed it, but if so then it is possible/likely they may have
> missed it too.
> There will always be some that miss it no matter how clearly it is spelled
> out and this happens in medicine, surgery, or trials consent or a banking
> document.
>
> What were they told?
>
> Why not ask the PI and/or the ethics committee the consent they  used  for
> the project? There is likely a standard template form.
>
> Best,
>
> Amy
>
> *Dr Ben Goldacre BA MA MSc MBBS MRCPsych*
>
>  Senior Clinical Research Fellow
>
>  [log in to unmask]
>
>  Centre for Evidence Based Medicine
>
>  Department of Primary Care Health Sciences
>
>  University of Oxford
>
>  Radcliffe Observatory Quarter
>
>  Woodstock Road
>
>  Oxford OX2 6GG
>
>
> *Current output: *
>    www.ebmDataLab.net
> <[log in to unmask]>
>    www.phc.ox.ac.uk/team/ben-goldacre
>
>
> * For anything other than CEBM / PHC work please use: *
>    [log in to unmask]
>
> * Public engagement and blog:*
>    www.badscience.net
>    www.twitter.com/bengoldacre
>
>
> On Mon, May 9, 2016 at 2:35 PM, Susan Fowler <
> [log in to unmask]> wrote:
>
>> No. I said nothing is free.
>>
>> --
>> Susan Fowler, MLIS
>> Medical Librarian
>> Coordinator, Systematic Review Services
>>
>> Evidence at Becker:
>> http://beckerguides.wustl.edu/ebm
>>
>> Systematic Reviews Guide:
>> http://beckerguides.wustl.edu/SystematicReviews
>>
>> Becker Medical Library, Washington University in St. Louis
>> 314-362-8092
>> [log in to unmask]
>>
>> On Fri, May 6, 2016 at 3:04 PM, vasiliy vlassov <[log in to unmask]>
>> wrote:
>>
>>> Dear Susan,
>>> did I understand you correctly that you are saying:
>>> because every body has its means of living (someone paying them an
>>> income), just because of this, the fruits of his/her (crowd of them) work
>>> may be used by third party for the profit?
>>> Vasya
>>>
>>>
>>> On 2016-05-05 16:45, Susan Fowler wrote:
>>>
>>>> Cochrane is not really free to anyone. In countries where people have
>>>> "free" access including Australia, they have it because their government
>>>> pays for it with taxes paid by citizens. Just like how the PubMed
>>>> interface to the Medline database isn't really "free" since it is paid
>>>> for with United States citizen tax dollars.Crowd sourcing isn't free
>>>> either. That crowd is already an elite set of people since they have
>>>> access to the internet and the hardware necessary to interact. Those
>>>> people are employed by someone paying them an income  or are supported
>>>> by their government that supports their crowd sourcing contributions.
>>>>
>>>> Researchers are welcome to publish their content in reputable open
>>>> source journals like PLOS and their institutions are happy to make their
>>>> content digitally available in repositories. In the US, journals
>>>> publishing reports funded with government money are required to make
>>>> access to those reports free. We have plenty of avenues for sharing our
>>>> content. We do not have to give up access and, these days, authors have
>>>> options to negotiate author agreements with subscription journals to
>>>> maintain access rights. If you need help figuring all of that out
>>>> contact a librarian.
>>>>
>>>> If you want access to information for "free", it doesn't stop with
>>>> university libraries, you can access content at your public libraries as
>>>> well. You can even do it online with a "free" public library account.
>>>> Even if your public library doesn't subscribe to a particular journal
>>>> they can get it for you, usually at not cost to you outside of the taxes
>>>> you have already paid to use the library in the first place.
>>>>
>>>> So when people complain about not having free access what are they
>>>> really complaining about? Because from my point of view, it seems like
>>>> there a lot of ways to access information for "free". If researchers get
>>>> paid to conduct research and write articles reporting the results, who
>>>> do we think pays the publishers to publish that content or the libraries
>>>> and librarians who work very hard to make access as easy as possible?
>>>>
>>>> I don't think Cochrane is aiming to derive financial gains either but
>>>> Cochrane doesn't just happen. Their are servers, content management,
>>>> interface design etc... that has to happen and that is not free. Nothing
>>>> is really free.
>>>>
>>>>
>>>> --
>>>> Susan Fowler, MLIS
>>>> Medical Librarian
>>>> Coordinator, Systematic Review Services
>>>>
>>> ...
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>> Vasiliy V. Vlassov, MD
>>> President, Society for Evidence Based Medicine (osdm.org)
>>> e-mail: vlassov[a t]cochrane.ru
>>> snail mail: P.O.Box 13 Moscow 109451 Russia
>>> Phone Russia +7(965)2511021
>>>
>>> Подпишись на новости на osdm.org
>>>
>>> --
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>>> individual and group e-mails. These extra actions on your part help to
>>> prevent spammers and hackers  from obtaining addresses and thus help
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>>>
>>
>>
>>
>>
>>
>>
>


-- 
Susan Fowler, MLIS
Medical Librarian
Coordinator, Systematic Review Services

Evidence at Becker:
http://beckerguides.wustl.edu/ebm

Systematic Reviews Guide:
http://beckerguides.wustl.edu/SystematicReviews

Becker Medical Library, Washington University in St. Louis
314-362-8092
[log in to unmask]