I started writing this post while watching a livestream of the LeWeb09 conference in Paris and finished it while watching a livestream of TEDxSV. Open Streams are of many kinds and shapes. They are completely changing how we consume information, news & entertainment.
..
It could be a joke and it could be funny! Instead, it is just the sad truth. And embedded in this sad, sorry truth, lies a complete lack of democratic ideals and a deliberate attempt by various parties to keep as much control of your health data as possible. The main communication tool in doctors’ offices at the end of 2009 remains the fax machine, a dinosaur-like, throw-away appliance that is no longer part of the communication tools used by modern communicators and regular users of the Internet. This is in contrast with what is taking place in the highly competitive and innovative world of social media and open streams, and you must conclude that there is a concerted effort by segments of the health care professionals to remain technologically backward.
Close to $2.5 trillions have been spent on health care since President Obama announced his decision to reform the health care system. A year later, as expected, all the talk in Washington remains about:
- the end/restart/end-again of the public option
- the expected final/interim/temporary definition of “meaningful use”
- the amount of savings/taxes/additional expenses
- move from FFS (I really mean Fee-For-Service) to PFP and
- comparative effectiveness/death panels/healthcare rationing
Have you heard ANY politician talk about patient/individuals empowerment in relation to health care reform? I have not! Health care reform is still 100% about reimbursement reform and 0% about social innovation. No surprise when individuals so often experience dehumanizing events when they interact with the medical system.
Patient empowerment cannot happen in this world without access to the data points that are necessary to make informed decisions. The new healthcare system must offer us, the end users and the people who indirectly pay for all of it, the ability to access directly and without any limitations all of our health data and the ability to create apps to use what is ours, in any form we deem acceptable. Last spring we crafted the Declaration of Health Data Rights for a good reason. We demanded ownership, access to a computable version and the ability to share our own data, including test results, prescriptions and tests, for a very good reason. Not much, if anything at all, has changed since then despite wide media coverage of the demand. My doctor still communicates with others through his fax machine. I am an original member of a large spiral CT scan clinical trial done at Cornell medical center and I still cannot get a copy of the scans, a digitally native application! Tell me why!
At the same time, just 3 days ago, in the company of 2,500 developers, you could experience “live” the competitive level in the world of social media. At the “Le Web 09” conference in Paris speakers representing Twitter, Facebook, MySpace, Ning, LinkedIn & SixApart all announced that starting in early 2010 anybody can have full access to their Open Streams. That means that anyone can have access in real time to all the conversations taking place through all these communication platforms. Twitter also announced that over 50,000 apps, each connecting to its platform, form its ecosystem. The disconnect between the 2 worlds couldn’t be stronger and shows why the current efforts at health care reform will fail if we the end users and innovators cannot full access to the data. That’s right: access to my data is the key to health care reform.
Adam Bosworth posted the following three days ago. It perfectly reaffirms the absurdity of this disconnect:
Much of personalized wellness advice depends on basic lab results like the lipid panel. The person with a total cholesterol of 150 may need different advice than the person with a total cholesterol of 250, for example. Today, if I go into a lab to get my blood drawn, say for my checkup, I cannot download the data into my personalized wellness tool of choice unless my doctor electronically approves it. Not because the lab cannot support this—90% of labs performed outside hospitals are covered by Quest Diagnostics or LabCorp and both support electronic data transfer. Rather, a doctor’s electronic approval is required to release the lab data to the patient, even when the patient wants this data. Well, most of the doctors aren’t using electronic systems and most of the ones who are don’t have the ability to approve these transfers, while some of the ones who do have the ability choose not to.
Even weirder, if you try to get your client ID with Quest, you’ll soon realize that YOU are not the Quest client. Your doctor is. Your doctor owns your health data! Will he/she still have a fax machine when you request the ability to connect, analyse and share all the data you personally collect as part of the Quantified Self movement, in addition to some of the genetic data that has been given to you by 23AndMe and the data that will certainly come from the Open Stream of companies like PatientsLikeMe or others that will use the growing power of Social Structured Data tools like what you can access at Factual. Obviously, in the highly social information age, knowledge building is constantly more about connections:
- between us and others,
- between us and our data and,
- between data from us and from others.
That is why I strongly support Adam when he says:
I call on DC and the State Legislatures to change these laws […] Pass laws that specifically give the lab companies the obligation to deliver our data electronically directly to us – the people, if we want it. If you desire true health care reform that actually will lower costs and curb illness, unleash the power of the innovators to help consumers with personal wellness as mint.com does with financial wellness. Release our health data.
This spotlights what has become, for me, one of the most irritating and unacceptable aspects of American healthcare: its absurd inability to move information around in anything like a modern way. Since information is what healthcare depends on, I consider this downright irresponsible, and we as citizens and clinicians ought to raise hell about it. The industry’s excuses are costing us lives.
How amazing, given the costs, that as 2010 approaches, this post takes us from a reality so bad it’s a literally Dilbert joke! to the current “Gimme My Damn Data” movement. (Said more politely, of course, by Mr. Bosworth.:–))
Thanks Gilles for the nice citation. It really is inconceivable in this day and age, let alone in a time when this failure is destroying millions of lives and bankrupting the nation.
Check out the WSJ interview with Jonathan Bush, chairman and CEO of Athenahealth, who derides the current system yet benefits from the fax swamp.
An excerpt:
…Athena designed a program to digitize records and automate billing. It now colonizes the wilderness of paperwork and habitual financial chaos that defines running a doctors office, and it is also moving into clinical record-keeping for individual patients. Some 15,000 physicians in 43 states use Athena as a virtual office, a number that is growing at an annual 30% clip.
It is a massive logistical undertaking. Athena’s main facility is housed in a decommissioned World War II arsenal on the Charles, where 30,000 pounds of paper is processed every month, most of the tonnage being paper checks. Incredibly, doctors also receive on average 1,185 faxes each month—mostly lab results—and those are handled too.
Read on: http://bit.ly/8VfJNI
Tom Friedman’s column in the NY Times, “The Do-It-Yourself Economy” is yet another example of how every segment of the US economy is being revolutionized by the existence of the Internet. Except for the health care system. Truly shameful!
So true. Phil Marshall (who just left WebMD) has been working on the lab data issue. But the fact that your doctor has to request your lab company for YOUR results is a travesty.
The only real option is for Quest & Labcorb to do what BIOIQ & MyMEDLab do and have an internal “doctor” who approves the requests. If we wait for the Feds it could be a long time.
One other note, we have 2 SEPARATE problems in health care in the US. 1) We need to protect people from financial devastation if they need care. 2) We need to use technology & innovation to blow up the care process and start again. We can do both. But we probably need to fix the first before the second. Which is why the BS in the Senate is so disheartening.
In today’s NY Times find the next element that confirms that the future is all about data flood, not control:
“A Deluge of Data Shapes a New Era in Computing”
Pay attention! This is from Dr. Gray, a world-class scientist. We are moving into the the fourth paradigm of science: data-intensive scientific discovery.
The goal, Dr. Gray insists, is no longer to have the biggest, fastest single computer, but rather “to have a world in which all of the science literature is online, all of the science data is online, and they interoperate with each other.”
Read the article, it is very interesting.
First, Gilles thank you for writing this post to high-light the amazing technology gap within medicine vs. social media.
I had the pleasure to view screen shots of two different ambulatory care centers EHR/EMR systems yesterday. Both were very DOS text based and had no element of windows based technology or a visual graphic interface. Even hospitals in the adoption phase are using systems designed for the last century. This is the era of Facebook and Twitter. We have very tech savvy people who would never accept such inefficiency of antiquated systems in any other part of their life.
AS far as complete medical records access for the patient… bring it on! How do you think we got Google? The information came first and then we began to do amazing things with the aggregate of that data.
The hard road we have ahead is making our citizens aware of their trampled health care rights. Pointing out the the obvious in a Dilbert cartoon maybe a way to do it. This almost 2010 we need to implement systems in line with the times.
Many of you maybe aware I worked in a toy-store for 12 years. A two years ago a toy came out called the “20 question ball.” This device that fits in the palm of your hand, was loaded with a dictionary and a mathematical algorithm. Think of something, anything. As long as you answer truthfully, In 20 questions the ball will figure it out. This is a toy. Think of what an API like this in medicine could do?