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Open Sourcing My Personal Medical Record
- blaurenceclark 9y agoAuthor here, If anyone has any questions about dealing with the medical system or about clinical trials ask away!
- herman5 9y agoWhat was the actual process of acquiring your entire medical record? My understanding was that this information can be highly fragmented depending on the number of different places one has received medical treatment.
- blaurenceclark 9y ago110% true, and I can give multiple examples of this 1) Fortunately I went to just one provider for all my treatment and they make the entire EMR extract available for patient download through their website (Sutter Health in CA) props to them for doing a great job at this 2) When dealing with issues w/ other family members and friends we've often only been able to get very minimal data extracts and had to actually fax in requests to get the full medical record sent to us on a CD weeks later. 3) Services are now popping up to do that for you, picnichealth, patientbank, etc. and they should be able to get your full detailed record to view for a cost instead of doing it yourself
- kiddico 9y agoI'm guessing you're the author then? I'm just making my way out of a course called Health Informatics. Most of what we've done is look at HIPAA, and the standards that make sending patient info from one hospital to another possible. In general the whole situation in a mess. I understand the purpose of not sharing identifiable data with the world, stops people from targeting people because of their conditions. But we have a wealth of information that's been made effectively useless from a research perspective. this isn't much of a question, just wanted to express my frustration with the whole thing as well. that said I've got a lot of respect for your mission, and the balls required to publish your otherwise HIPAA protected info.
- blaurenceclark 9y agoThanks a ton for the support!! If you ever wanna connect more on it email me!
- pc86 9y ago> I'm guessing you're the author then? The comment literally starts with "Author here"
- blaurenceclark 9y agoI added that after he asked that question, we'll give him a pass :)
- troyastorino 9y agoHey Brian, it's really great that you're doing this :) If there's more to your medical history that you want to track down, or you want to get your data transformed into a structured format, you should reach out to us at PicnicHealth and we'll see what we can do.
- blaurenceclark 9y agoI've been in touch with Noga before we def will! :)
- JoshMandel 9y agoThanks for this! Have you considered sharing DICOM files, too (i.e. the actual images from your MRI, in addition to the reports)? If so, what went into the decision not to include these?
- blaurenceclark 9y agoI'll add those in, just didn't download them yet haha
- jmhmd 9y agoIf you're interested in loading the DICOM files into a real viewer, you can try http://www.pacsbin.com http://www.pacsbin.com, a project I've been working on to keep a personal store of medical images and easily share them on the web. Everything you upload is be auto-anonymized, and you can view the images the same way a radiologist or other physician might.
- blaurenceclark 9y agoAhh great work! Will def check it
- tranv94 9y agoI'm really confused the purpose what this article's purpose is. You first talk about the issues with clinical trials then you throw in a tidbit of you just feeling like putting your medical records on public because you couldn't find many open medical records?
- blaurenceclark 9y agoGood feedback, when I initially was diagnosed and wanted to start working on this problem I had no idea what a medical record looked like so I didn't know what the data I'd be working with looked like which can be tricky to do a data project without knowing the data structure :) I just wanted to share mine in case anyone wants to tackle something medical record related in the future they'll be able to see what the data sets they'll be working with may look like! The clinical trial bit is our specific use of that data
- jpobst 9y agoI have a friend who is a medical researcher and it definitely seems they are stuck in the past. In order to study something, he has to: * Come up with a hypothesis that X may cause Y * Request access to data about that hypothesis * He is only given the data regarding his hypothesis * He can then study whether his hypothesis has merit or not We should be dumping these whole datasets into machine learning and having computers give us potential links to explore. Obviously there will be plenty of things that turn out to be unrelated, but it's also very likely the computer can find links that a human would not have considered. I don't see it changing any time soon in the US, but I suspect other countries with this data will use it, and we'll find the next generation of medical breakthroughs no longer come from the US.
- blaurenceclark 9y ago100% agree I hope we can get there!
- diegoprzl 9y agoWell, that's the way it's meant to be. Exploratory analysis doesn't have the same purpose as hypothesis testing.
- troyastorino 9y agoSadly, even countries with universal healthcare systems don't have universal health informatics systems (the NHS is a prime example — they spent £12B trying to build an integrated system [1]). Lots of countries attempt, including the US — HIPAA was actually originally about data portability [2], and we just spent another $40B [3]. Thus far only smaller countries have had success with integrated health IT systems [4]. [1] https://en.wikipedia.org/wiki/NHS_Connecting_for_Health https://en.wikipedia.org/wiki/NHS_Connecting_for_Health [2] https://en.wikipedia.org/wiki/Health_Insurance_Portability_and_Accountability_Act#Title_I:_Health_Care_Access.2C_Portability.2C_and_Renewability https://en.wikipedia.org/wiki/Health_Insurance_Portability_a... [3] https://en.wikipedia.org/wiki/Health_Information_Technology_for_Economic_and_Clinical_Health_Act#Meaningful_use https://en.wikipedia.org/wiki/Health_Information_Technology_... [4] https://en.wikipedia.org/wiki/Healthcare_in_Denmark#eHealth https://en.wikipedia.org/wiki/Healthcare_in_Denmark#eHealth
- willpearse 9y agoThis is a risky thing to do when the patient's name is attached to it. Insurance companies, salesmen, etc., could do quite a lot with such information. I whole-heartedly support the general idea, and making a centralised database of things like this would be great. Such a database would probably make it easier to anonymise the data as well.
- herman5 9y agoAnonymize then let the flood gates open.
- zzalpha 9y agoDe-anonymizing medical records strikes me as a fairly easy problem to solve... the information is literally one large biometric database.
- blaurenceclark 9y agoThere are actually government mandated methods for deidentifcation https://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/ https://www.hhs.gov/hipaa/for-professionals/privacy/special-...
- jldugger 9y ago> government mandated methods Is that supposed to imply they work?
- dragonwriter 9y agoActually, if you read that, they aren't government mandated methods (in the technical sense) there's an option of either using a government-specified safe harbor method or getting an "expert determination" that the data is deidentified.
- blaurenceclark 9y ago
- awinter-py 9y agoWe should (as a society) consider open sourcing every medical record. Medical privacy is ethically tricky. It (1) protects bad doctors, (2) makes it harder to develop treatments, (3) makes it hard for consumers to shop intelligently. Medical privacy would be useful when negotiating cost of coverage with your insurer, but they have a contractual right to demand your complete medical record. The best arguments I've heard for medical privacy are (1) you might not get a job if you're sick, (2) shame factor could prevent people from going for treatment and (3) you may not get a date if you have, say, herpes. (#3 is true but not necessarily a strong point from a social standpoint).
- codemac 9y agoYour #1, #2, and #3 are all the same thing, but I think it's hugely important: Medical records can show all kinds of markers about your past / current behavior that let people paint pretty horrible assumptions about eachother. Type 2 Diabetes? Man you must eat poorly. Herpes? You must have gotten from being promiscuous and risky Depression? Must not be able to deal with the shit that is real life. Hormone therapy? Dental issues? Pain killers? Allergies? I mean the list is almost as long as the list of all medical issues that people. Just about every medical condition, people paint with behavioral moral/ethical judgement which is almost entirely unfair. I think medical privacy is hugely important for society as we currently are, and losing it would not change these effects, but instead increase the ease to discriminate against them.
- awinter-py 9y agoAlso possible that we judge each other because medical privacy gives us a false impression of the world. Or because privacy allows people living in glass houses to throw stones. Either way -- if opening medical records leads to new treatments, it may be worth the shame.
- pavel_lishin 9y ago> Either way -- if opening medical records leads to new treatments, it may be worth the shame. That's incredibly easy to say if you don't have any of the problems listed.
- voicedYoda 9y agoThank you for sharing this. We (I) founded a company to help with several niche aspects of healthcare and the bureaucratic issues faced by administrations. We are finding success with data transactions, and while there are some companies out there who work really hard to make transaction engines, it's not very efficient, very expensive, and doesn't benefit the consumer at all. My past experience as a software developer was, "Give me all the datum, and tell me what you need, then I'll make it work." I even worked for a very large EMR (probably the biggest on the planet), and getting a patient record out of their system is a nightmare, even though the foundation of their application is the patient record. I'd love to converse more about what you're building, as we capture many unstructured documents and are now using ML to grab details out of these and match to criteria.
- blaurenceclark 9y agoAbsolutely please shoot me an email!
- IdleChris 9y agoWas there a link to the actual MRI file and not just the JPEG slices of the damaged bone?
- blaurenceclark 9y agoUnfortunately my provider doesn't have that for full download for me, I need to drive there and pickup a CD and haven't had the time to do that yet. Plan to get the full file soon!
- geoffc 9y agoCTO at ambrahealth.com here, once you get the CD you can create a free account at our site and upload the MRI for cloud viewing and sharing. A lot of providers are starting to use our service to electronically share the images with patients instead of CD's.
- ipunchghosts 9y agopicnichealth could easily add a "opt in" option whereby patients can opt their data into to trials. Institutions could pay for access to all this curated data to use for testing or recruitment of patients.
- howderek 9y agoMe and many others have done this for a long time. The Harvard Personal Genome Project [1] is a large open database of people's genetic and phenotypic information. Here is my profile: https://my.pgp-hms.org/profile/hu1247AF https://my.pgp-hms.org/profile/hu1247AF You can add your Personal Health Record to it. [1] http://personalgenomes.org/ http://personalgenomes.org/
- abetusk 9y agoThe Harvard Personal Genome Project is great (I'm a participant) but there are some other projects that are complementary as well, such as Open Humans [1] and Open SNP [2]. [1] https://www.openhumans.org/ https://www.openhumans.org/ [2] https://opensnp.org/ https://opensnp.org/
- blaurenceclark 9y agoAh awesome!!!! Shoot me an email would love to chat more about that. The one thing that I wanted to offer that's different than those other sources is if I was an engineer who wanted to see what working with EMR data was going to be like I can't find an EMR export online anywhere (CCDA and raw notes) for using ML and NLP to analyze.
- Kinnard 9y agoI bet this at scale, like a github for medical records, would be revolutionary.
- brynlewis 9y agoYou can view the CDA (xml) documents here: http://intelsoft.com.au/challenge/index.htm http://intelsoft.com.au/challenge/index.htm CDA are xml document conforming to a schema specified for medical documents.