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.

I work at UAMS with Bart Barlogie, MD, (quoted in the article as the physician who ran the first clinical trial of the use of thalidomide in treatment of Myeloma) who is a brilliant, innovative clinician researcher who has extended the life of many patients with Myeloma with his treatment approaches.  I, like many of my “e-patient” colleagues, was also a good friend of Tom Ferguson, MD, who came to UAMS and was treated with thalidomide in 1999.    Tom was also the founder of the “e-patient scholars” who started this web site and still meet annually.  What he began has morphed to the budding Participatory Medicine movement, evidenced by the formation of the Society of Participatory Medicine and the soon-to-be-launched Journal of Participatory Medicine, which I will Co Edit along with Jessie Gruman.  And that takes us back full circle to this story of a patient doing research about their condition as an example of Particpatory Medicine, which Tom strongly encouraged,  facilitated and exemplified with his actions.

Whether Beth Jacobsen’s accusations about Celgene stealing her husband’s idea has merit or not is not something I am prepared to comment on.  I’ll let the courts sort that out.  But the fact that her husband pushed her physician to try a novel approach to try to save his life, and that it was tried (even though it didn’t work for him), is an example of what will happen increasingly in the “new world of Participatory Medicine”.

The article notes that, although Mr. Jacobsen didn’t respond to Thalidomide, the next patient had a dramatic response.  Again, ironically, Tom Ferguson was one of the early patients who was treated at UAMS by Dr. Barlogie with Thalidomide.  His Myeloma was rather advanced at the time, in 1999.  Whether the Thalidomide was the reason or not, he did well for years after that.  I didn’t meet Tom until much later, in 2005 and he died of complications of his disease in 2008.

So, he would undoubtedly be cheering with the knowledge that the treatment that helped him beat back his disease for over a decade was probably “discovered” by a patient who was practicing Participatory Medicine!

How many other clinical trials are out there waiting to be started by ideas engineered by patients who have the utmost to gain and the ultimate motivation–saving their own life.

Participatory Medicine:  Patients doing research, usually online, and taking the ideas into the medical arena.  Get ready, it’s going to be a brand new world!