I hate to be the voice that repeats what others are saying, however it was recently stated in the Wall Street Journal and has been retweeted in the digital health echo-chamber: “Data is the currency of healthcare”…and it is liquid. Liquid gold. It can be packaged, repurposed and traded for big money.
It hit me right between the eyes last year at the HIMSS conference – : who were all these people, and what were they peddling? What are they making and what were they selling? Data-Gold. As a doctor on the front lines, I had a sinking feeling and the cold realization that while all the razzle-dazzle on the exhibition floor (complete with models, give-aways and million dollar booths), the data that was being traded was collected by doctors and provided by patients. Simply put, patients are data and the doctors role is to collate, codify and create meta-data. That is, doctors synthesize thedata presented and generate more data (diagnosis, treatment) which we then enter into a machine (electronic medical record). That little machine is connected to some tubes and wires and the data defies gravity and heads straight up to the cloud.
The image that continues to torture my imagination is an army doctors, running from room to room on the proverbial hamster wheel of medicine entering data up to the cloud where nymphs with gold cups of champagne and data/analytics CEO’s were bathing in hundred dollar bills chortling merrily at their successes (on the backs of the data collectors).
While the Sugar Data’s mint cash, doctors are told they can expect decreasing reimbursement for the next decade.
Encyclopedia Britannica is a cautionary tale for doctors (and patients). They had all the data but did not understand it’s value when digitized. Wikipedia ate their lunch. I had lunch the other day with a physician employed by a foundation and was flummoxed to hear that her $5,000 performance bonus check was going to the foundation, not her. She had no idea, nor any access to the performace data and had it not been for an accidental letter sent to her about the check, she would have never known. Ah, the dark art of data control. If we as a society don’t get this digital health data ownership correct, actors will be creating the health version of credit default swaps. oy.
A brief history of medicine shows that HMO’s divided and conquered the medical field, almost disemboweling the profession. Health Plans formed a cabal and coerced doctors into signing contracts attached to their payment ‘black box’. Fortunately, a patient/public backlash, not a well coordinated physician effort killed the HMO. While HMO’s are a good idea in principal, they are warts without data transparency. The brave new world of ACO (accountable care organizations) are really HMO 2.0 with data. Sadly, if physicians don’t lean forward and put a stake in the ground, the data will be owned, lock, stock and barrel by someone else.
Physicians need to get their head out of the sand. Data will be their savior if they stand together, stand strong and own it. Everyone and their brother wants to own the data; Hospitals, Plans, EMR’s, Pharmacies, etc. We, as a profession, need to realize this is our hour to seize. We have the unique position of talking to our patients everyday. We can build a movement and alter the course of history…but we have to act quickly. Data and analytic companies are sprouting up like mushrooms and if we let them do what HMO’s tried to do, it’s going to be a slow, painful death.
Imagine a world where the doctor and the patients come together and create a Bill of ‘Health Data’ Rights. Let the use of data be agreed upon up front and with consent by the parties that generate the data. I can foresee a world where patients can be data donors, much like organ donors, so long as their information is de-identified and used for research.…yet, if their data is delivered into the stream of commerce, they would get a royalty. Same goes for the data the doctors make.
Data is power. Big data is big power. The last thing we need is to trust it in the hands of profiteers.
The digital health movement says ‘transparency’ but no one is really transparent.