There are two definitions of the word “Hacker”. One is an original and authentic term that the geekdom uses with respect. This is a cherished label in the technical community, which might read something like:
“A person adept at solving technical problems in clever and delightful ways”
While the one portrayed by popular culture is what real hackers call “crackers”
“Someone who breaks into other people computers and causes havok on the Internet”
People who aspire to be hackers, like me, resent it when other people use the term in a demeaning and co-opted manner. Or at least, that is what I used to think. For years, I have had a growing unease about the “split” between these two definitions. The original Hackers at the MIT AI lab did spend time breaking into computer resources… it is not an accident that the word has come to mean two things.. It is from observing e-patients, who I consider to be the hackers of the healthcare world, that I have come to understand a higher level definition that encompasses both of these terms.
Hacking is the act of using clever and delightful technical workarounds to reject the morality embedded default settings embedded in a given system.
This puts “Hacking” more on the footing with “Protesting”. This is why crackers give real Hackers a bad name. While crackers might technically be engaged in Hacking, they are doing so in a base and ethically bankrupt manner. Martin Luther King Jr. certainly deserves the moniker of “protester” and this is not made any less noble because Westboro Baptist Church members are labeled protesters too.
Continue reading “Hacking Healthcare”
Filed Under: THCB
Tagged: Data, e-patients, Fred Trotter, Hacking Healthcare, Health 2.0, Health: Refactored
May 14, 2013
I am happy to announce the release of the doctor “referral” social graph. This dataset, which I obtained using a Freedom of Information Act request against the Medicare claims database, details how most doctors, hospitals and other providers team together to deliver care in the United States. This graph is nothing less than a map of how healthcare is delivered in this country.
For the time being, the only way to get a copy of this data set is to support the Medstartr crowd funding campaign for either $100 (for the viral “open source eventually” version of the data) or $1000 (for the proprietary friendly version of the data, that any business can freely “merge” with other data). If you need consulting around this data, you can buy in at the $5k or $10k levels. Also, we are going to have really awesome t-shirts.
I will be writing a more in-depth technical article about this dataset over on the brand new O’Reilly Strata blog (which focuses specifically on Big Data) so I will gloss over most of the technical details here, with a few important exceptions.
First, when I say a “graph” I am not talking about a diagram. I am talking about a mathematical model that supports nodes and connections between those nodes. These are visualized as diagrams, but it is not possible to really analyze large graphs without a database. In this case, the nodes are doctors, hospitals and other providers and the connections between those nodes represent the degree to which they collaborate on specific patients.
Also, despite my branding to the contrary, this is not strictly a “referral” data set, although a fairly large portion of the data do represent referral relationships. Instead, it depicts the degree to which any healthcare provider “works” on a patient in the same time frame as some other provider. This means, for instance, that many primary care doctors are linked to emergency rooms. But this just means that a patient they were seeing was also seen by the emergency room in the same time period. Referral relationships can be inferred from this data, but not presumed. Continue reading “Tracking the Social Doctor: Opening Up Physician Referral Data (And Much More)”
Filed Under: THCB
Tagged: ACO Wrangler Project, Consumer's Union, Data, Fred Trotter, Freedom of Information Act Request, MedStartr, Micro Incubator, Not Only For Profit, Physician Referral, ProPublica
Nov 5, 2012
In a few days, I will be releasing the most controversial healthcare project I have ever worked on. But you do not need to take my word for it. I will be releasing a completely new healthcare data set. That data set, which will remain a “Mystery Data Set” until its release to the healthcare data scientists attending Strata RX, should completely revolutionize the way we think about healthcare delivery in the United States.
This mystery data set is the first real outcome of the Patient Skunkworks project. Patient Skunkworks is a new way for me to try and create high-impact but low-profit software projects. This is part of a new Not Only For Profit software development model that I have been working on. The new company forming to do this work will be called Not Only Development.
I will be releasing this data during the last keynote on the first morning (Oct 16) of the 2012 Strata RX conference. There is simply no way, in a single keynote, to even begin understanding all of the ways that this data set will be leveraged to improve healthcare. More importantly, there is really no way to adequately explain why I would choose to give away such a valuable and dangerous data set.
To help people digest the implications of this data set, I will be writing two articles about the data set. This one, before the release which helps to explain the underlying motivation behind the release, and another one after the release explaining what the data set is, and how I think it can be leveraged.
I am releasing this dataset because I believe that the only way to solve the problems in healthcare is to embrace a radical openness with health data. Healthcare data, with the exception of patient identity data, belongs in the open, in the sunlight. When used correctly, I believe that healthcare data should make patients feel empowered, and everyone else in the healthcare industry uncomfortable. I believe that patients deserve deep, dangerous and real access to data. I think when we start talking about how data might actually be dangerous for patients, its just a sign that we are “doing it right”. I call this concept Radical Access to Data (and yes, that recursively spells “RAD”).
Continue reading “The Mystery Data Set”
Filed Under: THCB
Tagged: Blue Button, Direct Project, Fred Trotter, Hacktivist, Health Data, Mystery Data Set, Not Only Development, Open Notes, Patient Skunkworks, Radical Access to Data, software, Strata RX, Susannah Fox
Oct 12, 2012
Yesterday, Meaningful Use Stage 2 was released.
You can read the final rule here and you can read the announcement here.
As we read and parse the 900 or so pages of government-issued goodness, you can expect lots of commentary and discussion. Geek Doctor already has a summary and Motorcycle Guy can be expected to help us all parse the various health IT standards that have been newly blessed. Expect Brian Ahier to also be worth reading over the next couple of days.
I just wanted to highlight one thing about the newly released rules. As suspected, the actual use of the Direct Project will be a requirement. That means certified electronic health record (EHR) systems will have to implement it, and doctors and hospitals will have to exchange data with it. Awesome.
More importantly, this will be the first health IT interoperability standard with teeth. The National Institute of Standards and Technology (NIST) will be setting up an interoperability test server. It will not be enough to say that you support Direct. People will have to prove it. I love it. This has been the problem with Health Level 7 et al for years. No central standard for testing always means an unreliable and weak standard. Make no mistake, this is a critical and important move from the Office of the National Coordinator for Health Information Technology (ONC).
Continue reading “The Direct Project Has Teeth, but It Needs Pseudonymity”
Filed Under: Uncategorized
Tagged: Direct Project, EHR, Fred Trotter, Meaningful Use, Meaningful Use Stage 2, NIST
Aug 24, 2012
Who owns a patient’s health information?
·The patient to whom it refers?
·The health provider that created it?
·The IT specialist who has the greatest control over it?
The notion of ownership is inadequate for health information. For instance, no one has an absolute right to destroy health information. But we all understand what it means to own an automobile: You can drive the car you own into a tree or into the ocean if you want to. No one has the legal right to do things like that to a “master copy” of health information.
All of the groups above have a complex series of rights and responsibilities relating to health information that should never be trivialized into ownership.
Raising the question of ownership at all is a hash argument. What is a hash argument? Here’s how Julian Sanchez describes it:
Continue reading “Who Owns Patient Data?”
Filed Under: Uncategorized
Tagged: Data, EHR, Fred Trotter, HIPAA, IT specialists, IT vendors, Meaningful Use, Ownership, personal health information, PHR
Aug 20, 2012
Yesterday, one of the founders of Twitter, Biz Stone, gave the opening keynote at HIMSS.
This is probably going to be the best keynote at HIMSS, followed by a speech from Dr. Farzad Mostashari, which will also be excellent. It goes downhill after that: there will be a talk about politics and another talk from an “explorer.” I am sure those will be great talks, but when I go to HIMSS, I want to hear about health information technology. Want to know what @biz actually said? As usual, Twitter itself provides an instant summary.
HIMSS stands for Healthcare Information and Management Systems Society. The annual HIMSS conference is the largest Health IT gathering on the planet. Almost 40,000 people will show up to discuss healthcare information systems. Many of them will be individuals sent by their hospitals to try and find out what solutions they will need to purchase in order to meet meaningful use requirements. But many of the attendees are old school health IT experts, many of whom have spent entire careers trying to bring technology into a healthcare system that has resisted computerization tooth and nail. This year will likely break all kind of attendance records for HIMSS. Rightly so: The value of connecting thousands of health IT experts with tens of thousands who are seeking health IT experts has never been higher.
It is ironic that Biz Stone is keynoting this year’s talk, because Twitter has changed the health IT game so substantially. I say Twitter specifically, and not “social media” generally. I do not think Facebook or Google+ or your social media of choice has had nearly the impact that Twitter has had on healthcare communications.
HIMSS, and in many cases traditional health IT along with it, is experiencing something of a whirlwind. One force adding wind has been the fact that President Obama has funded EHR systems with meaningful use, and made it clear that the future of healthcare funding will take place at Accountable Care Organizations (ACO) that are paid to keep people healthy rather than to cover procedures when they are sick. It is hard to understate the importance of this. Meaningful Use and ACOs will do more to computerize medicine in five years than the previous 50 years without these incentive changes. Continue reading “Who Is Biz Stone and What Is Twitter?”
Filed Under: THCB
Tagged: ACOs, Biz Stone, Blogs, Fred Trotter, Health 2.0, HIMSS 2012, Social Media, Twitter
Feb 22, 2012
Once a persons record has gone electronic, it really should never go back.
A paper printout of an Electronic Health Record is often huge and unwieldy. If it is printed out or faxed it creates something so huge that it is pretty impossible to be useful in a paper record.
This is the reason why need electronic interoperability solutions like the Direct Project. Without it, when a patient leaves one doctor, they have to print out an electronic record, take it to the next doctor, and then have that doctor scan the record in.
That doesn’t sound too bad until you realize that a patients printed EHR record often looks like this:
This image was provided to me by Jodi Sperber and Dr. Eliza Shulman, who generously agreed to share the photo under a Creative Commons license. Here is the full description from Flickr, which provides greater context.
An example of why interoperability is as important as the electronic health record itself.
The story behind this photo: This is a printout of a patient’s medical record, sent from one office to another as the patient was changing primary care providers. An EHR was in place in both offices. Additionally, the EHR in both offices was created by the same vendor (a major vendor); each health organization had a customized version. Without base standards the systems are incompatible. Instead, the printouts had to be scanned into the new record, making them less searchable and less useful.
Note that this was not the entirety of the patient’s medical record… Just the first batch received.
Fred Trotter is a recognized expert in Free and Open Source medical software and security systems. He has spoken on those subjects at the SCALE DOHCS conference, LinuxWorld, DefCon and is the MC for the Open Source Health Conference. He has been quoted in multiple articles on Health Information Technology in several print and online journals, including WIRED, zdnet, Government Health IT, Modern Healthcare, Linux Journal, Free Software Magazine, NPR and LinuxMedNews.
Filed Under: Electronic Health Records
Tagged: EHR, Fred Trotter, Open Source
Jun 17, 2011