
Medicine needs to embrace open source - jrepinc
https://www.zdnet.com/article/medicine-needs-to-embrace-open-source/
======
jcranmer
I'm not an expert in drug development, but even I was really skeptical when
reading the Washington Post article on Pfizer "burying" the Alzheimer results.
Derek Lowe (an actual drug discovery chemist) did put out on article with his
thoughts on the article, which were similarly damning:
[https://blogs.sciencemag.org/pipeline/archives/2019/06/06/a-...](https://blogs.sciencemag.org/pipeline/archives/2019/06/06/a-missed-
alzheimers-opportunity-not-so-much)

The impression the original article gave was that the company ignored
compelling evidence because they couldn't make any money off of it. But the
"compelling evidence" actually comes across more like the sort of thing you'd
find here: [https://www.tylervigen.com/spurious-
correlations](https://www.tylervigen.com/spurious-correlations) . As Derek
Lowe puts it, "One of the biggest objections to the idea inside the company
was that this finding was unlikely to be real because Enbrel doesn’t really
penetrate into the brain."

A final coda: the actual data may not have been public, but the potential
correlative results were published in 2010:
[https://www.ncbi.nlm.nih.gov/pubmed/20478733/](https://www.ncbi.nlm.nih.gov/pubmed/20478733/).
So much for being buried?

~~~
wutman
Exactly. People tend to overstate the importance of spurious, surprising
findings that don't make scientific sense. Some of these may lead to
breakthroughs, sure. But the overwhelming majority are just noise. And it
takes experts to decide which are worth investigating. To wit, anti-vaxers
love subgroup analysis without supporting scientific logic (ie more autism in
this population of 5 boys from the study).

I'd hate to see old, frail people getting Etanercept (an immunomodulator) to
prevent Alzhemier's based on very questionable evidence when all they really
get are the costs (increased risk of serious infections leading to death-- an
FDA black box warning).

------
xvilka
There is an Awesome List[1] of open source healthcare projects. Also a quite
nice blog[2] about various FOSS initiatives. Some of the important medical
projects were accepted[3] in the Google Summer of Code this year.

[1] [https://github.com/kakoni/awesome-
healthcare](https://github.com/kakoni/awesome-healthcare)

[2] [https://medevel.com/](https://medevel.com/)

[3]
[https://summerofcode.withgoogle.com/organizations/](https://summerofcode.withgoogle.com/organizations/)

------
neural_thing
Fun fact, it costs hundreds of dollars, just to LOOK at some safety standards
in medical devices, for example:

[https://webstore.iec.ch/publication/2606](https://webstore.iec.ch/publication/2606)

~~~
derefr
Weirdly, this can also be true in FOSS software. Despite e.g. DBMSes like
Postgres being open-source, SQL-the-standard costs ~USD$180 to read:
[https://www.iso.org/standard/63555.html](https://www.iso.org/standard/63555.html)

~~~
butteroverflow
Here's a related discussion:

[https://news.ycombinator.com/item?id=20174847](https://news.ycombinator.com/item?id=20174847)

------
agotterer
If you are interested in open source medicine there are two amazing HOPE talks
you should watch:

1) How to torrent a pharmaceutical drug -
[https://youtu.be/Py5TkirrO-U](https://youtu.be/Py5TkirrO-U)

2) Torrent more pharmaceutical drugs (follow up 2 years later to video 1)
[https://youtu.be/cfrfs7W-K_k](https://youtu.be/cfrfs7W-K_k)

------
Jedd
This is one of the better examples of where the use of 'open source' rather
than 'free' distracts everyone from the end goal.

This particular case may well be a beat-up, but there's undeniably a regular
habit within pharma to not publish neutral or negative results, and we don't
know how useful those data may be simply because we don't have access to them.

AFAIK no country has laws requiring this, so it's not a regulatory /
enforcement problem - it's a legislative one.

------
jussij
> Because Pfizer believed it would lead others down a wrong path.

Call me a sceptic but I don't believe that for a minute.

Instead I'm sure they acted on some other ulterior motive.

~~~
gumby
Believe me: if you had a drug that had _any_ positive effect on Alzheimers
you'd be rich beyond the dreams of Croesus. What possible incentive could
Pfizer have to suppress something they thought could be useful?

Read the link to Derek's Loew's analysis in Science for deeper analysis: it's
posted elsewhere on this discussion.

~~~
bboygravity
Valacyclovir

[http://www.virology.ws/2018/11/08/herpes-simplex-virus-
and-a...](http://www.virology.ws/2018/11/08/herpes-simplex-virus-and-
alzheimers-disease/)

~~~
SketchySeaBeast
At the end of your article:

"I understand that AD affects many families who would very much like to have
an intervention for the disease, and are anxious to see this trial clinical
proceed. Nevertheless, I do not feel that this trial is warranted based on the
existing data. Additional studies are needed to understand the mechanistic
connection between HSV-1 infection and AD, and specifically to clarify whether
infectious virus, or viral proteins are involved."

Sounds like it's not yet in the realm of proven effectiveness.

------
forgot-my-pw
I think it will be cool if there's a pharma company that would use
crowdfunding to decrease the medicine costs. So each tier/goal will unlock
additional benefits.

For example, if they created drug X with the research cost of $10M. When
sales/crowdfunding reaches:

\- $1M: drug margin is reduced by 10% \- $5M: drug margin is reduced by 50% \-
$10M: drug is sold at cost & recipe is now open-sourced

These clear goals will be big incentive for people and organizations to
donate. A successful fundrasising could drive new medicine cost way down or
open-source it.

But of course, the system can still be exploited by inflating cost numbers,
etc.

~~~
froindt
Maybe it could work for a non profit, but the medical world has so many
methods they start exploring but find are unfruitful (with many thousands to
hundreds of millions invested). You essentially have to make boatloads of
money on some products over a long time frame to continue the research and
development efforts.

~~~
forgot-my-pw
For sure. This will only work if someone wants to fund an "ethical" / non-
profit pharma research company.

------
pg_bot
We should start with an open source drug interaction database...

~~~
iak8god
DrugBank contains interactions:
[https://www.drugbank.ca/interax/drug_lookup](https://www.drugbank.ca/interax/drug_lookup)

And is downloadable under a CC license:
[https://www.drugbank.ca/releases/latest](https://www.drugbank.ca/releases/latest)

The US National Library of Medicine provides an API to query drug interactions
based on DrugBank:
[https://rxnav.nlm.nih.gov/InteractionAPIs.html#](https://rxnav.nlm.nih.gov/InteractionAPIs.html#)

~~~
pg_bot
This is not useable for electronic prescription of drugs in the US. That is
the problem I want solved.

~~~
iak8god
Could you explain more what you mean, both about what problem you want solved
and why this is not useable?

~~~
pg_bot
There is currently a monopoly in electronic prescriptions in the US.
Surescripts runs the only network that connects electronic health records to
pharmacies. (over 99% of electronic prescriptions are sent using them) They
dictate that you must have a contract with an approved commercial prescription
drug database vendor.

I want the industry to come together and make an open source drug database so
that it can become the world standard. This way a lot of legacy businesses
will no longer have a reason to exist and charge exorbitant licensing fees.

~~~
iak8god
I am still having trouble understanding the specific problem you want solved,
and what an additional open drug database would add that DrugBank lacks but
that is required to accomplish your solution.

It seems like your frustration is mostly with the Surescripts monopoly on
electronic prescribing. You say that they dictate an approved commercial
vendor. This is a very different problem, and would have very different
solutions, than the problem _We don 't have any open source drug interaction
database_, which is where this thread started.

~~~
pg_bot
The difference is quality. The existing open source solutions are frankly not
good enough. Industry should come together to sponsor an open version that
matches the quality of vendors which will become the canonical source of truth
for the world.

~~~
marcinzm
What's the monetary benefit to the industry in doing that?

The open source solutions aren't good because validating and fixing this data
is very time consuming (read: expensive) and carried legal liability (read:
expensive). Open source tends to not be good at requiring many people to do
tedious things (see: most open source documentation). Companies could pay
people to do it but then you've recreated a commercial vendor except
competitors who don't pay get a benefit. Companies tend to open source things
which are not direct competitive advantages for others in the same industry
while this would be exactly that.

------
behnamoh
I know it's off-topic, but with all the attention FOSS and other Open-Source
projects get these days, I've been thinking about the final consequences and
paradigm changes they impose on businesses and societies. In a world where
FOSS has won, what new businesses emerge and how do they operate? It's an
interesting question for me, because I believe one reason we're not there yet
is not that business owners have philosophical problems with the idea of Open-
Source, but rather most don't know how that'll be profitable for them. I know
there are successful examples in which Open-Source has helped the business
model (RedHat, etc.), but the bigger question is how can it be successful in
other businesses and contexts (such as medicine)?

~~~
rebelrexx858
you might look at the novel Autonomous by Annalee Newitz for her take on such
a world, it's quite interesting

~~~
behnamoh
Thanks for telling me about it! I'll sure give it a look.

------
noobermin
This is a case of reading the headline, but really, no one other than
developers embrace open source, if were honest with ourselves.

~~~
s0rce
Physicists seem to be doing a pretty good job, mathematicians as well.

~~~
noobermin
For some areas of physics. In my field(plasma physics modelling), non-open
source codes abound.

~~~
phkahler
Why? Who owns them?

~~~
noobermin
There are some understandable reasons, some of them related to them containing
potentially export controlled models. Even then, you could strip out those
bits but for some reason, no one does it because they see no need to once they
have access to the code. Often a hefty (for academics) license of 4 figures a
year gives them access to modify the source code but they can't share their
modifications with others.

------
_def
This news site is absurd! Reminds me of
[https://news.ycombinator.com/item?id=20172214](https://news.ycombinator.com/item?id=20172214)

------
g00s3_caLL_x2
Medicine in America will never do this, at least not for the foreseeable
future.

They moved from 'cures' decades ago.

Plus add a big heaping spoonful of the FDA and the red-tape that must be
jumped through.

Anytime someone ingests something, someone, somewhere, will die from it.

When you work in pharma, you learn that there are teams of lawyers and budgets
just to deal with the inevitable deaths.

Just getting to human trials during the experimentation phase takes years.

I'd say look more toward real-working natural cures and improving our
lifestyles and environments would be more realistic in the short term.

~~~
postpawl
“According to industry watchdogs, reducing clinical trial costs will not help
curb list prices because those prices are not determined by investment costs;
they’re determined by what the makers think the market can bear, which helps
explain why profit margins are so high.”

[https://www.nytimes.com/2018/06/08/opinion/drug-approval-
cut...](https://www.nytimes.com/2018/06/08/opinion/drug-approval-cutting-
prices.html)

~~~
vibrio
isn't that a bit circular? If investment costs (lets include capital, time,
and risk)were low, wouldn't there be a influx of motivated innovators to
create a greater selection of new drugs, which would either drive down price
of equivalent drugs (or produce better drugs with are more efficacious/less
toxic)? If investment costs/risk aren't limiting abundant new drugs, what is?

~~~
g00s3_caLL_x2
The FDA.

IIRC approval time takes about 10 years minimum. Then you have 20 years to
cash that cow out before the patent runs out.

~~~
vibrio
So the FDA should be more lax on requirements for approval? Should they reduce
the Preclicnal PharmTox requirements? How long should a cancer trial take if
it has 500 brain cancer patents to enroll and it measures improvements in
survival that takes over a year? Should Pharma just one study or should they
do a coulple of serially run clinical studies to understand the toxicities and
how the drug works best? I'd love for development timelines to be quicker, but
I need a Gantt chart to better understand where the time savings would come
from without compromising the safety and data supporting efficacy. Help me
understand.

Also. Most substantial patents are filed way before the approval of the drug.
Rarely if ever has a drug had, for example, a composition of matter patent for
20 years after approval-- even with the extensions for regulatory delay that
the USPTO allows. Not to say that Pharma don't extensively engage in product
life-cycle management, sometimes very questionably extending exclusivity of
products, and that is something that should be addressed.

