[opensourcepharma] Draft Open Ebola Letter

Sat Aug 9 19:54:48 UTC 2014

Hi Els,

Thanks for clarifying. This looks promising.

Regards,
Tomasz

On Sat, Aug 9, 2014 at 9:34 AM, Els Torreele <
els.torreele at opensocietyfoundations.org> wrote:

>  Hi Tomasz and all,
>
>
>
> These are not independent threads at all – let me clarify:
>
>
>
> Now that WHO has declared ebola a public health emergency, they are taking
> the lead in coordinating/organizing the world’s response to ebola including
> research and testing potential treatments. And this is an emergency
> response, so expected to move quickly.
>
> So WHO is really who we need to convince (more than Farrar and co., who
> can influence but will not drive)
>
>
>
> As we know, WHO is convening a medical ethics expert group next week to
> discuss how to go about testing the drug candidates that may be out there,
> a discussion, which could/should already include discussion on the need for
> sharing what is known already, as well as a commitment to share the results
> of further research/testing, i.e. to take an open source approach.
>
>  So the idea of the letter Piero sent internally, is to try and get WHO
> on board *now* to take an open source collaborative approach on this from
> the start (ie next week), to take the initiative themselves instead of
> being urged to publicly.
>
> If they do, and they might, considering their commitment to the CEWG
> process and the pilot projects, we’ll be in an excellent position to assist
> with all the ideas/initiatives we’ve been talking about in/since Bellagio.
>
>
>
> If there’s no immediate embrace of the idea – we will proceed with the
> open letter to urge them and all involved publicly.
>
> So no delays expected at all, but possibly a more effective way to get an
> open source approach accepted by those who will lead the efforts.
>
>
>
> Hope this clarifies.
>
>
>
> As I don’t know who is on this email list (Mat: is the list available
> somewhere?) I’m not sending this to all, but please fwd to those
> individuals you know are part of this specific discussion and directly
> concerned.
>
>
>
> So let’s continue refining the letter in terms of content/arguments why an
> open source approach could speed up finding a cure as well as be
> game-changing for drug R&D, and we’ll use it to either support WHO/bring
> others on board or else urge WHO and others.
>
>
>
> Els
>
>
>
>
>
> *From:* opensourcepharma [mailto:opensourcepharma-bounces at lists.okfn.org] *On
> Behalf Of *Tomasz Sablinski
> *Sent:* Saturday, August 09, 2014 6:34 AM
> *To:* OLLIARO, Piero Luigi
> *Cc:* opensourcepharma at lists.okfn.org
> *Subject:* Re: [opensourcepharma] Draft Open Ebola Letter
>
>
>
> Dear All,
>
>
>
> I think there are 2 somewhat independent threads here.
>
>
>
> 1/ the letter to WHO to inform them of OSP's approach
>
>
>
> 2/ the willingness of OSP to do the right thing: engage a broad crowd to
> find/expedite cure/prevention
>
>
>
> I understand that most of us agreed that #2 is a go. Therefore, I suggests
> that #1 is a nice to have, but non essential step. I appreciate the
> sensitivity of working with various agencies, etc but often this equals
> slowing down the progress, and sometimes a slow death.
>
> So, if we decide that we as OSP will implement crowdsourcing approach,
> let's focus our attention on how to do it best. The letter to WHO will or
> will not be sent based on Piero's insight but waiting for feedback should
> not prevent us from planning the fundraising and securing in-kind support
> of few experts form CDC, etc.
>
>
>
> In other words, let me be provocative and ask the group: if we hear from
> the WHO that they are not certain if opening up the discussion via
> crowdsourcing was good idea, would we retreat?
>
>
>
> Best regards,
>
>
>
> Tomasz
>
>
>
> On Fri, Aug 8, 2014 at 5:34 PM, OLLIARO, Piero Luigi <olliarop at who.int>
> wrote:
>
> Dear All
>
> Please be informed that I’m seeking clarification from those at WHO
> already looking into open-source options. We have discussed this with Mat
> and Els, and we agreed that, at this point, it is therefore preferable to
> postpone sending a letter to others until WHO position is clearer.
>
> I will keep you posted.
>
> Best wishes
>
> Piero
>
>
>
> *From:* opensourcepharma [mailto:opensourcepharma-bounces at lists.okfn.org] *On
> Behalf Of *Tomasz Sablinski
> *Sent:* 08 August 2014 20:45
> *To:* Matthew Todd
> *Cc:* opensourcepharma at lists.okfn.org
> *Subject:* Re: [opensourcepharma] Draft Open Ebola Letter
>
>
>
> Mat,
>
>
>
> This looks good; thanks for driving it. I suggest a paragraph - may need
> to be shortebned/ tweaked - and is a bit controversial:
>
>
>
> "Knowledge generation in this area should be driven by a public good, not
> by a potential financial gain of any one company. Opening to the public the
> process of knowledge generation will force companies owning certain IP
> rights to contribute to the discussion, while allowing them to preserve
> some financial gain in case of success."
>
>
>
> Regards,
>
> Tomasz
>
>
>
>
>
>
>
> On Fri, Aug 8, 2014 at 11:56 AM, Matthew Todd <mattoddchem at gmail.com>
> wrote:
>
> Further to Els's very interesting suggestion, here's Draft 1.
>
>
> https://docs.google.com/document/d/10qD0-CLlBKp_6COmMUffZp9mp4NwJGlmcwb5Jjt_wDA/edit?usp=sharing
>
> Edit away or comment, here or on the document itself. It needs to be
> short! I think given who it's addressed to it needs to be clearly a
> recommendation of the idea, rather than a direct appeal for any funding. We
> can do a lot here in advance of any up-front financial commitment, but
> which may lead to more substantial efforts later that require dollars.
>
> I'd suggest the letter come from a defined group of us, and when published
> we could ask for wider expressions of support somewhere, from the public.
>
> It feels like we'd have more impact with the support of an Ebola
> researcher - we are addressing the letter to one of the discoverers of the
> virus, I understand, so maybe that's the way to do it.
>
>
>
> Els - do you have a venue for this, and a way to alert people to it?
>
> Best,
>
> M
>
>
>
> --
>
> MATTHEW TODD | Associate Professor
> School of Chemistry | Faculty of Science
>
> THE UNIVERSITY OF SYDNEY
> Rm 519, F11 | The University of Sydney | NSW | 2006
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> E matthew.todd at sydney.edu.au | W
> http://sydney.edu.au/science/chemistry/research/todd.html | W
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