Doctors (and patients) must own their data or they will lose the most precious asset in healthcare and possibly their future.
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.
Briefly, and in no particular order:
The employer pays for a portion of your healthcare, you pay the rest out of your paycheck. It really depends on Employer as to how much of the bill they foot. This is a very good point.
Payers are cost plus businesses. They are pass-through middle men that really pay for nothing. They get paid by employer/individual and add a premium so they never lose money. Why should they own the data?
Most music and art is ‘for hire’ and the person who created it owns the copyright. This is complicated but a good point and something that should be unpacked.
Thanks again for your good questions.
Fascinating discussion on healthcare data rights. I look forward to Bill of Health Data Rights. I pose for discussion, should not the organization paying for the care, also have rights? The payer, employer? In the music analogy above, if I paid the musician to write me a song, do I not own it? Does the discussion/ownership change when the data is de-identified?
I am working on the Bill of Health Data RIghts – which I will publish as an open source construct soon.
I do think giving each patient a unique ‘health data tag’ or ‘health digital fingerprint’ (akin to a SSN# for an individual’s aggregate health data points) so she and her doctors could keep track of her health data (where is it, who generated it, who is currently or could be using it, etc) and provide opt-in incentives to share or keep certain data private, that could be very powerful for both patient and physician to improve health decision making and outcomes.
On a separate note, how do the payors profit from all this Data Gold?
I work with de-identified patient data and focus my efforts on health outcomes research (rather than commercial research). I see the value of all the disparate data sources where health and other non-health data is collected and how it can improve healthcare — provide information to providers; educate payers (why they should cover new treatments or genetic testing); educate government (REMS reporting, etc.) BUT there is always another side – there are always bottom line for pharma or medical device companies.
The thing I find funny is that people don’t like the idea of their health data being assembled and used in research for manufacuters but they don’t mind it being used to aid providers or payers or government from “learning” — 1) you can’t have one without the other; 2) people are constantly putting data on themselves into their android or iphone apps/devices — this data CAN and WILL be linked to health data. Financial data, what you purchase in at grocery store, etc. CAN all be used to integrate with other data. If you don’t want your data shared/integrated, stop providing it where you can control it.
For the providers, the best way to “own” your data perhaps is to utilize the EMR for your practice in a consistent manner across patients and across practitioners in the practice – either through office staff or through your software provider, ask them for reports and perhaps utilize modules for reminders on patients due vaccinations, annual visits, etc. If you can build value within your practice, ask to take it to your colleagues or others using the same software. If you enter data into an EMR, you CAN query it and therefore “own” it.
To the point on all doctors knowing everything about you – I don’t agree with this. Patients should own who knows what about themselves. Do I think it is critical for my allergist (for instance) to know about my gynological or prostate status – possibly not. Perhaps allergist should explain to me WHY it is important she know about that before she be given access.
I don’t think you are saying that research, heavily data dependent, hasn’t been going on for a long time with patient data. It makes sense to me that using data (with permission of patients when necessary and appropriate) to improve care and reduce costs makes sense to me. Better understanding of what works and what doesn’t affects all of us – whether we are benefiting from better care or just indirectly paying for it (via government or insurance payments).
Ah, this is for another post. The short version is this:
Music has notes – and they are free
Musicians create music and package it up in a special way that enables them to get a copyright.
Patients are the data and currently it’s free
Doctors take the data and turn it into diagnosis and treatment plans.
The cynics in the audience will argue that your wonderful “set my people free” data speech here is the typical Silicon Valley – revolution for the sake of the business model I’m currently pitching to investors.
Tell us more about your vision of data ownership. How is it going to work?
This is for another post…working on it.
Thanks for including patients in the discussion. One of the few times I have seen that suggested. Patients should be in control of their data and consent to how it is being used and who gets to use it. Agree with above post that patients should be the primary beneficiaries of their own data. This is not Facebook. This is healthcare.
For some reason, we (the ‘collective we’) but not me (for the record) view healthcare as a different beast than other industries…and while there is merit to this, the bottom line is that there is not healthcare system without patients and they are, ostensibly, the most important part.
I view healthcare as a dyad, which is one part doctor and one part patient – both equal parts.
Great post. For patients it’s so hard to get our data. When I read the title I thought it might be about diabetes data which is especially hard to get hold of, and impossible to integrate. And yes, it’s of great interest to research organizations. DiabetesMine has a great post about this issue.
The crazy thing is that data also has a ‘waiting room’ in the healthcare system..