Our Medical Data Must Become Free | Hacker News Reader

Our Medical Data Must Become Free

backchannel.com

60 pointssteven26 comments

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.

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.

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.

How do you feel about not being able to share in the profits of the commercialization of your medical data and other discarded cells (i.e. blood samples, hair)? Because that's the legal precedent right now in the United States: https://en.wikipedia.org/wiki/Moore_v._Regents_of_the_Univer...

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.

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?

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...

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.

you could try scihub http://scihub22266oqcxt.onion/

What was the literature / publishers? Sounds interesting.

This one was a useful review with most current treatment strategies [0], that publication also helped me to focus on ALT and AST levels to see the type (biliary or liver related, this has treatment implications.). The drug I mentioned is Metamizole, investigated here [1], in this article they also show Morphine to specifically increase Spincter of Oddi spasms! A post on a Dutch website [2] helped convince me that Metamizole may be an option, indeed it is back in pharmacies around the Netherlands since 2 years (after a ban since 1972). Yet another article convinced me surgery may not be the best option and we should try a pharmacological approach first. [3] You see, it quickly becomes an expensive thing to do. The bad thing is, these paywalls confine people without access to the literature to blogs and discussion forums. I read a lot of strange things there. Of course being a scientist I may be better at judging the value of online material but, even my wife who is a marketing specialist got great value out of publication [0], it also contains some very nice visuals.

[0] http://www.ncbi.nlm.nih.gov/pubmed/26431602 ($31.50)

[1] http://www.ncbi.nlm.nih.gov/pubmed/8794800 ($39.95)

[2] http://www.medischcontact.nl/archief-6/tijdschriftartikel/11... (Free from a medical website, in Dutch)

[3] http://www.ncbi.nlm.nih.gov/pubmed/22529689 (Free online article!)

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/

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

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.

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.)

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.)

This is part of ARRA Meaningful Use requirements, most hospital systems are going this route in order to comply. [1]

[1] https://www.healthit.gov/providers-professionals/achieve-mea...

Along those same lines - we recently needed to have some blood tests run on our son in the hospital. While we were waiting for the doctor to come back with the results, my wife received an email stating that the test results were online and available for viewing. Naturally, we looked at the results right away on her phone. I wasn't expecting them to be so efficient!

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... "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.

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.

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.

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...

[2] http://www.fda.gov/downloads/MedicalDevices/DeviceRegulation...

> 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".

HIPAA was signed into law in 1996.

The importance of privacy of medical information goes all the way back to the Hippocratic oath, so no, it IS physicians and patients themselves driving concerns about privacy.

You really don't know what you're talking about.

I guess I got confused about the details of all the superfluous legislation that our Congress is passing under the pressure from lobbyists...

Before the internet, we had concerns about privacy. Records were locked away. But a physician could get records at the hospital to care for the patients (who, by the way, stayed in the hospital until they were well - none of this 'profit seeking' length of stay limit).

Release of records to the OUTSIDE required a letter from the patient or a court of law. Now that electronic medical records have supplanted the old system, we are all worried about privacy because the new tech. Can you honestly say that electronic medical records have turned out to be a good thing for patients?

I offer patients a USB stick with all their data for $10. And they would not have to type a thing- I already do all of the data entry as part of my encounter with them. 9 out of ten patients choose not to buy it. ( A telling fact is that if I offer it for free, they say they would take it) A simple usb stick with all your files and meds would save so much hassle. Security? Zip up the data with a password, use true crypt, there are so many options for protection. But the main advantage is that the data will only be on the stick and not on the net. So who REALLY benefits by having info about YOUR body on the cloud?

You'd think people would keep a record on their smartphones-there are so many apps for this. But instead, when I visit patients in the hospital, they are playing temple run or candy crush.

Privacy is not really the issue. It is a straw man for hiding other agendas

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...

>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.

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.

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