[opensourcepharma] a open source cure for Ebola?

Thu Aug 7 16:10:47 UTC 2014

It’s also clear that we’re not the only ones thinking about this, and research efforts are mounting that look at possible new treatments, even if most of it seems stuck in the more “traditional” R&D way.

So if there’s something for us to add, it is to promote and emphasize the possible added value of doing this in an Open Source way, and how it might speed up the delivery of a desperately needed treatment by pooling intelligence and creativity, sharing all data/knowledge and crowsourcing ideas and expertise and research infrastructure. We don’t have much to contribute on the science, but what we want to put forward is the possible added value of the “alternative model” in terms of process & principles.

Here’s another example, a recent one, in which this was done successfully:

From the Royal Society 'Science as an Open Enterprise': 1.3 The power of intelligently open data
https://royalsociety.org/~/media/Royal_Society_Content/policy/projects/sape/2012-06-20-SAOE.pdf

‘The benefits of intelligently open data were powerfully illustrated by events following an outbreak of a severe gastro-intestinal infection in Hamburg in Germany in May 2011. This spread through several European countries and the US, affecting about 4000 people and resulting in over 50 deaths.
All tested positive for an unusual and little-known Shiga-toxin–producing E. coli bacterium. The strain was initially analysed by scientists at BGI-Shenzhen in China, working together with those in Hamburg, and three days later a draft genome was released under an open data licence.
This generated interest from bioinformaticians on four continents. 24 hours after the release of the genome it had been assembled.
Within a week two dozen reports had been filed on an open-source site dedicated to the analysis of the
strain. These analyses provided crucial information about the strain’s virulence and resistance genes – how it spreads and which antibiotics are effective against it. They produced results in time to help contain the outbreak. By July 2011, scientists published papers based on this work. By opening up their early sequencing results to international collaboration, researchers in Hamburg produced results that were quickly tested by a wide range of experts, used to produce new knowledge and ultimately to control a public health emergency.'
Within two months, sorted.

From: Jaykumar Menon, Prof. [mailto:jaykumar.menon at mcgill.ca]
Sent: Thursday, August 07, 2014 11:33 AM
To: Els Torreele; Bernard Munos
Cc: opensourcepharma at lists.okfn.org
Subject: RE: [opensourcepharma] a open source cure for Ebola?

See also http://www.nytimes.com/2014/08/07/business/an-obscure-biotech-firm-hurries-ebola-treatment.html

Love the discussion and I agree with all.  The entire world’s attention is on Ebola.  When does a neglected disease ever get so much attention?   This is an emergency, and shows the need for a better heath R&D model, and we can be of help.

Reminds me of when we did the Ocean Oil Spill Clean Up X Prize.  We drafted an idea while the oil was spewing, got funding in 2 weeks,, and were a huge global event, playing out over the next 9 months, jarring that industry and making a better solution.

You guys are the experts, but it seems that if  we can quickly come up with a simple concept/project that is rapid, sound, high profile, understandable, of real help, and also ideally with some drama, maybe with a mass participation element (e.g crowdsourcing ideas, even citizen  or citizen scientist participation), and is within our abilities, that could capture the planet’s imagination, and boost the alternative model.   And we may be just nimble enough to do it.   From the discussions below it looks like it could be done?  Repurposing?  Clinical trials via Transparency?  Both? More?

We’d have be careful to not promise too much, as Bernard says, but so long as we did that, we could do the convening in  a “non-stealth” way, just to show there are new ways of doing things…

The overall idea seems pretty nice and simple:  Open source pharma – [working on] fast new cures for Ebola.

Bias towards action, as they say.

J

From: Els Torreele [mailto:els.torreele at opensocietyfoundations.org]
Sent: Thursday, August 07, 2014 7:16 AM
To: Bernard Munos; Jaykumar Menon, Prof.
Cc: opensourcepharma at lists.okfn.org<mailto:opensourcepharma at lists.okfn.org>
Subject: RE: [opensourcepharma] a open source cure for Ebola?

http://www.nytimes.com/2014/08/07/world/africa/who-weighing-emergency-decree-on-ebola.html

*Expert Panel to Consult on Ebola*

*By **RICK GLADSTONE*

<http://topics.nytimes.com/top/reference/timestopics/people/g/rick_gladstone/index.html>

AUG.

6, 2014

Scrambling to catch up with the worst outbreak of the deadly Ebola virus, the World Health Organization announced Wednesday that it was considering the declaration of an international public health emergency and would convene a panel of experts in coming days to explore the use of experimental treatments for the incurable disease.

<SNIP>

The health organization said an emergency committee of international experts was evaluating whether the Ebola outbreak constituted a “Public Health Emergency of International Concern,” a classification that has only rarely been invoked to combat deadly contagions. The classification gives health authorities greater powers that include quarantining people in affected areas. The committee’s recommendations are expected by Friday.

In a separate announcement

<http://www.who.int/mediacentre/news/statements/2014/ethical-review-ebola/en/>,

the organization said it was convening a panel of medical ethicists to explore the use of experimental treatments for Ebola, which has a mortality rate as high as 90 percent. The virus causes high fevers, aches and severe internal bleeding.

“We are in an unusual situation in this outbreak,” Dr. Marie-Paule Kieny, the W.H.O.'s assistant director general, said in the announcement. “We need to ask the medical ethicists to give us guidance on what the responsible thing to do is.”

Several experimental options are under development, including a drug administered to two Americans <http://www.samaritanspurse.org/article/samaritans-purse-doctor-serving-in-liberia-west-africa-tests-positive-for-ebola/>who

had been working with Ebola patients in Liberia through Christian relief groups. Both were flown to Emory University Hospital in Atlanta and have shown improvement, causing an international debate over why Americans were given the drug when hundreds of Africans have died without access to it.

The W.H.O.'s announcement also cited the relief group workers’ apparent response to the drug, saying it had “raised questions about whether medicine that has never been tested and shown to be safe in people should be used in the outbreak and, given the extremely limited amount of medicine available, if it is used, who should receive it.”

Asked about such treatments, President Obama told a news conference in Washington it was premature for him to say, but he did not rule it out.

“We’ve got to let the science guide us,” he said.

From: opensourcepharma [mailto:opensourcepharma-bounces at lists.okfn.org] On Behalf Of Bernard Munos
Sent: Thursday, August 07, 2014 2:49 AM
To: Jaykumar Menon, Prof.
Cc: opensourcepharma at lists.okfn.org<mailto:opensourcepharma at lists.okfn.org>
Subject: Re: [opensourcepharma] a open source cure for Ebola?

Perhaps we could approach the authors of the papers I listed earlier about joining a science advisory board that could help identify the repurposing candidates with the best potential. These scientists also have access to tools (e,g, assays) that could come in handy in evaluating new candidates, if need be. Key thing: we must be careful about how we communicate, and not promise a drug before we have one. There are too many examples of things that work in the lab, but not in humans.

b

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