"Open Source Medicine as the Next Insanely Great Thing" | h+ Magazine

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Jata (Parijata Mackey)

Sep 30, 2009, 12:07:07 PM9/30/09
to Open Source Medicine
Open Source Medicine as the Next Insanely Great Thing
From: http://hplusmagazine.com/articles/health-medicine/open-source-medicine-next-insanely-great-thing

Part of the reason that many people read h+ and other radical
technology publications is to get ideas about how to live longer.
People tend to become like those they are around, so it makes sense if
you want to live to 150, you want to help your friends live longer.
Since we don’t know everything about longevity, it’s now time to
design a machine that will inspire and invite a massive global effort
toward collective medical intelligence, and in honor of his numerous
marketplace wins based on ease-of-use so good it motivated
evangelists, we nominate Steve Jobs as our design inspiration.

Steve Jobs’ recent liver transplant provides an example of how open
source medicine can save a life. In 2004, Steve Jobs announced that he
had been treated for a rare form of pancreatic cancer called islet
cell neuroendocrine tumor, which is curable — if removed quickly —
through surgery. In an Apple memo, Jobs declared that the tumor had
been successfully removed, and no further treatment was required.
However, the rare, slow-growing tumor has a high rate of metastasis:
75% of patients will experience the spread of the disease, most often
to the liver. Chemotherapy is not usually an effective treatment if
the disease has spread to multiple parts of the liver, and a
transplant is often recommended. Using the same intellect that made
iPhone apps accessible in one touch (as opposed to having to find them
in a folder three levels down like competitive smartphones), Jobs
applied open source medicine to take the most direct route to life-
saving treatment.

According to the United Network for Organ Sharing, in 2006 the
national median waiting time for a liver transplant was 306 days. In
Tennessee, it is 48 days. There are no residency requirements to
receive transplanted organs in Tennessee, so California Steve became
Tennessee Steve in order to get the transplant, which was performed
successfully. To get on the waiting list in another region, a patient
must get a referral, and travel to the region’s transplant centers for
an evaluation. Steve Jobs was first on the list almost immediately
after signing up, indicating the power of open source medical
knowledge used as wisely as Jobs has Apple designers apply usability

Information is empowering, and more informed patients can make more
informed choices. If one person can use a little bit of medical
information to so effectively save one life, how can a lot of us
benefit from a lot of medical information so that many of us can live
much longer?

Let’s look at a notoriously tangled mass of information: the human
genome. The sequencing of the genome in 2003 promised wild advances in
medical science. The benefits were supposed to be enormous. Knowledge
of the genome would revolutionize health, galvanizing the field of
personalized medicine. And in many ways, it has. But most of us are
unfamiliar with how to reap the rewards from our tax investment in
this research. The steps toward personalized medicine are many, and
enormous amounts of data must be parsed before we can make it a

So it’s 2015 and you decided to shell out and get your genome
sequenced. You get a huge .txt file, with a bunch of characters. You
have no idea where each gene begins or ends, and there’s no way to
make sense of it all. The letters go on for miles, and the so-called
color code makes it even more confusing.

To make genome data useful, we need a user-friendly database that
tells us the sort of things we’d want to know while looking at genome
data. Which string of ATCG’s will tell us that we have an increased
risk of skin cancer? What are our options for avoiding illness in the
future? Are there any gene therapies available?

Imagine the power of an open source movement driving the
bioinformatics of aging. How many hours would you devote to extending
your own lifespan?

These questions may only be addressable on a massive scale, with data
being constantly refined and analyzed by thousands of users in an open
source fashion. Open source medicine is an emerging movement with this
very goal in mind. Concerned, talented individuals can work
collaboratively to understand the knowledge held in genome data —
humans working together to decode the meaning behind their very DNA.
Once empowered with information, individuals can also choose to pursue
genetic enhancement.

Imagine the power of an open source movement driving the
bioinformatics of aging. How many hours would you devote to extending
your own lifespan? If you could log in tomorrow to MitoSENS, and spend
some time helping catalog genetic damage caused by free radicals, or
modeling lysosomal storage diseases, thus potentially extending the
lives of millions, would you?

We must look past the unprocessed data and see the information that is
directly and immediately relevant to our lives, our health, and our
longevity. The time may be right for a movement in open source
medicine. Start benefiting from your knowledge today.

Wikipedia is proof that reputation and a sense of contribution are
sufficient to motivate many. But Wikipedia’s secret is an easy,
intuitive interface that allows us to comfortably input data. The
creation of an interface that allows us to easily and readily work
with medical data would be a huge leap forward towards open source

And excellent interfaces are Steve Jobs’ specialty.
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