
Our Medical Data Must Become Free - steven
https://backchannel.com/our-medical-data-must-become-free-f6d533db6bed#.avkp2wb88
======
stewbrew
The phrase "medical data should be free" is a trojan horse. Your medical data
is yours and should always be your own -- unless you yourself say otherwise
for specified used of specific parts of your data. Otherwise, due to market
forces and financial constraints, your data will be turned against you before
anything else.

The quality of medical care for the majority of people doesn't depend on the
freedom of your data but on the quality of communication between doctors and
patients and between health professions. These are low tech problems though
for which you cannot get much research funding.

~~~
officialchicken
I agree. Medical data must not be free in any way, shape, or form. It would
only be used to drive up the price of delivery in the form of fatter profit
margins.

> "Otherwise, due to market forces and financial constraints, your data will
> be turned against you before anything else"

Currently, it's using "manufacturer coupons" for meds, given out at your
doctor's office and then filled at your local Rx to skirt around HIPAA. Each
one has a unique serial number for a reason.

Research data, on the other hand, must be more free - but there are no
standards for anonymization of patient data prior to release.

~~~
dharma1
I agree, would be fantastic to have equivalents of ImageNet for different
types of medical images - high quality, pref labeled anonymised data sets
where the data set size is sufficiently large to train high quality networks.

------
teekert
The same should hold for medical literature. I was only able to investigate
current best practices for an intestinal problem my wife has because my
company pays to get behind paywalls of publishers. Because of those articles I
was able to identify the type of dysfunction my wife probably has, the most
advised treatment and a drug that recently came back to the market after being
banned for poor reasons for years. Granted, one of the doctors knew most of
these things but the physician we had spoken to before really had not read
literature in a long, long time. I understand this can be difficult given how
busy they are, but at least make sure patients themselves are able to access
such truly vital data.

Due to this literature I was even able to prevent the nurse from administering
morphine which I suspected (it was indicated in literature) would have made
the pain much worse. I asked him stick to antispasmodics and the attack
(Sphincter of Oddi Dysfunction) has never been so mild. It's crazy if you
think about it.

~~~
pramodliv1
Today, my dad was prescribed a drug released on September 2015. But papers
explaining the "exciting results" were behind paywalls.

Do you know if medical researchers publish papers on a personal website as
well? Are they forced to not make their research public?

~~~
teekert
I think they hardly do, they could get in trouble. You could try this:
[http://www.ibtimes.co.uk/i-can-haz-pdf-academics-tweet-
secre...](http://www.ibtimes.co.uk/i-can-haz-pdf-academics-tweet-secret-code-
word-get-expensive-research-papers-free-1525241)

I'd like to share but I have seen often that a cover page is added with an IP
address which can lead to problems for the sharer, perhaps meta data is also
added about the download? One can only hope researchers will once avoid closed
journals. I think they should, especially when they are paid by public money.

------
randlet
On a related note I recently had some lab work done and was _dumbfounded_ when
the nurse looking after me told me I could now sign up on their website[1] and
access my results as soon as the tests were finished being analyzed. Sure
enough, less than 24 hours later I was able to log in and see the results of
all my tests (or download a pdf) and whether they were in the normal range or
not. The site even has trending built in so you can plot results over time for
repeated tests.

Being able to print out your results and take them with you to the doctors so
you both are on a level footing with respect to _your_ health information is
very empowering.

If you're a Canadian in Ontario or B.C. I heartily recommend using their
labs[2].

[1] [http://www.lifelabs.com/](http://www.lifelabs.com/)

[2] not affiliated, just a happy "customer".

~~~
maxxxxx
Kaiser Permanente in California has a website with all records. I went there
to get a blood test and the results showed up on the web site over the next
few days.

I could check the values myself for abnormalities even before talking to a
doctor which was very nice.

~~~
phaedrus441
This is becoming relatively common these days. As hospital systems switch to
more-advanced EHRs, patients are often asked to sign up for a web-based
account. From my experience, most hospitals are either going with products
from Cerner or EPIC, and both offer this function (and even the ability to
read physician notes, etc.)

~~~
__float
Just a note--this is a requirement for Meaningful Use stage 2, which means
it's pretty much the case everywhere these days. (And it's Epic, not EPIC.)

------
lvspiff
I remember just a couple years ago Microsoft and Google both had "health"
portals that would allow you to aggregate data from various providers. After
some time though it became clear that doctors and insurance companies were to
beholden to their own products to allow such a platform to aggregate results.
Thus the platform failed as not enough opportunity was given.

And to quote this article: [http://mobihealthnews.com/11480/10-reasons-why-
google-health...](http://mobihealthnews.com/11480/10-reasons-why-google-
health-failed) "As much as we’d like to think it isn’t the case, the
fundamental driver of most (not all) behavior in healthcare is the
reimbursement scheme... To understand the impact, I’ll exaggerate to make a
point—your healthcare provider doesn’t care about you unless they can see the
whites of your eyes. Why is that? Today’s flawed reimbursement scheme only
compensates the healthcare provider for a face to face visit."

Thus until a broken model of healthcare is fixed in many many ways we will be
stuck in the same old model for years to come.

------
bawana
Obama threw a bone to the software companies by creating HIPAA AND the
electronic medical record law. HIPAA prevents people from sharing data on a
platform that is not CCHIT compliant. The law mandating EMR (or else doctors
and hospitals get paid less if they cannot show they are using it) is a big
profit center for software companies. It’s not the medical industry driving
this data jail, it’s the software companies. It goes all the way back to
Microsoft who showed that you can become a trillionaire if you create a
product that requires ‘licensed specialists’ to service and maintain.

~~~
daigoba66
To be pedantic, HIPAA was signed into law in 1996. Obama obviously had nothing
to do with that. Technically the HITECH act was signed into law by Obama, in
Feb 2009. But that was only a few weeks after he took office.

The Affortable Care Act _is_ largely thanks to Obama. And it did add new
regulations related to HIPAA and HITECH. But the core principals that you
mentioned were already tehre.

~~~
officialchicken
Just adding some links to support the above comment - HITEC was part of the
"American Recovery and Reinvestment Act of 2009" [1] following Hurricane
Sandy. Additional clarifications for internet-enabled devices was released by
the FDA in early 2015. [2]

[1]
[https://www.gpo.gov/fdsys/pkg/PLAW-111publ5/html/PLAW-111pub...](https://www.gpo.gov/fdsys/pkg/PLAW-111publ5/html/PLAW-111publ5.htm)

[2]
[http://www.fda.gov/downloads/MedicalDevices/DeviceRegulation...](http://www.fda.gov/downloads/MedicalDevices/DeviceRegulationandGuidance/GuidanceDocuments/UCM263366.pdf)

~~~
chimeracoder
> HITEC was part of the "American Recovery and Reinvestment Act of 2009" [1]
> following Hurricane Sandy.

No, Sandy was in 2012. HITECH was part of the ARRA, more commonly known as
"the stimulus package".

------
siculars
Heres something I wrote a while back on healthcare data integration[0]. Yes,
this is a real problem. Yes, it's worse than you can imagine. No, I don't see
it getting much better in the short term. Given enough volume from the people
it should change.

Disclaimer: I used to work on these problems at a major academic medical
center.

[0] [http://siculars.posthaven.com/health-data-integration-
regula...](http://siculars.posthaven.com/health-data-integration-regulation-
and-incentivization)

~~~
commandar
>If a system stores data, the vendor will provide an API and/or SDK, with
accompanying documentation, such that authenticated requests may create, read,
update or delete that data programmatically as appropriate.

I almost feel like you're overstating the current state of the market here.

Yes, things are very bad as they stand today. Interop is _nowhere_ near where
it should be. There are definitely vendors that do their best to wring out as
much lock-in as possible (e.g., Epic), but most systems can be integrated
through HL7 messaging and --increasingly-- CCD exchange. I'd say that the
biggest issue with it right now is that most vendors treat integration as a
(very expensive) value-add rather than core functionality. The situation could
be better, but the problem today has as much to do with legacy systems that
are going to take a long time to integrate or replace as anything, IMO.

I do find it interesting that you talk about healthcare taking a page from
social media because that's essentially the direction the market is already
headed with HIEs. I'm most familiar with McKesson's RelayHealth because it's
what I've worked on, but HIEs can be thought of as Facebook for healthcare.
Patients can connect to their providers, messages can be sent between provider
and patient, and clinical data can be shared to the patient or to other
providers that are appropriately linked (like with a referral).

From what I've seen, industry reaction to HealthKit has been pretty lukewarm.
I'm not optimistic about Apple establishing themselves as a particularly
strong presence in the larger healthcare space.

And, FWIW, the HITECH has lit a fire for both facilities and vendors both to
get their act together on this front by tying Medicare reimbursement rates to
use of both EHRs and interop with HIEs.

------
theklub
Patient portals are being rolled out all over. Give 5 years and they will be
everywhere I think.

The only problem I see with giving someone complete access to their records
would be the ability to edit those records. I think that's a barrier we will
never be able to overcome which means a trusted source will always need a
copy.

