Uberizing Health, Data is the Vehicle … And a Right

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No, there is no Uber of healthcare, even as everyone claims to be or wants to be the Uber of healthcare. Others rail against it.

Part of it is that an Uber for healthcare sounds great! The sharing economy! But what is it? What would it even look like? Everyone has their own interpretation: is it house calls? appointment scheduling like ZocDoc? telehealth? PatientsLikeMe?

The movement Uber, AirBnB and the like embody is often referred to as “the sharing economy.” No matter what you call it: sharing, borrowing or buying, it’s a platform for effective exchange, enabled by the peer to peer connections over the internet, but it’s not new, just more mobile, more convenient with more specific use cases around surplus capacity of some sort.

The model was pioneered by companies like craigslist and eBay, who first offered free or low-cost methods of buying and selling everything from toys to automobiles; and sharing information to everything from lost dogs to love connections. Using these early internet tools to find a job, a book group, or a place to unload your old IKEA furniture led the way to today as the sharing takes place with mobile assets (cars) enabled by smart phones.

We see these everywhere now, because they are efficient and convenient.


An important thing to note is that, aside from Netflix, in each of the above examples users are contributing to the value of the network. This is a key point as we look at how networks evolve in the often-used image below.

So how do users contribute to health care? Where is this network evolution in health care, helping us find the things we need on the fly in a peer to peer manner? First, a question.

What is health care’s core unit of value?

You can answer that question easily for taxi systems: it’s the passenger capacity of a car. With AirBnB, it’s a bed, a place to sleep.

What is this unit for health care?

It’s not an easy question, and that’s part of the reason why there is not true Uber for healthcare.

At its most simple level, most of us get healthcare because we need something fixed — that’s also why we rarely think about health until we are no longer healthy. You need to heal, you need to get better, you need a better you, but there’s no single way to deliver that. There’s no one thing to “get”, like a ride or a bed, and we usually go to the doctor to find out what we need. What we really need is a decision.

The fundamental unit for health at any given moment is an effective decision for you to be a better you.

And a lot of times that means a physician, and so, for much of health care, physician time has been the limiting resource, the core unit of value. So it makes sense for a ZocDoc to come about to improve management of limited capacity of clinics. They operate a bit like Uber, an appointment availability is published, and users can the select it.

But the appointment is just one way for us to get decisions.

So where is healthcare’s true underutilized inventory of excess capacity?

HHS CTO Susannah Fox said it best on twitter a few weeks ago. https://twitter.com/SusannahFox/status/669509859264581632:

Susannah Fox Twitter

In short, it’s us, we are the vehicle in the Uber analogy, not the doc or appointment, they just guide the vehicle. The “vehicle” or “bedroom” in the health care uber/airbnb analogy is in how we model ourselves with information. Only our models of ourselves will allow us to drive toward.

Our only way to build such a vehicle is with data.

The model will be driven by some core elements that must come together in our models of ourselves: measurements about our internal states, our external surrounding and environment including social determinants of health (SDoH) and ongoing population data and clinical research for predictive modeling, and coaching to drive behavior change.

In the near future, there isn’t much we won’t have in terms of raw material to build these models isn’t much data about ourselves we won’t be able to get in our very own homes in the very near future. Mobile ultrasound sharing is already a thing. It’s sharing a kind of selfie within a selfie.

It’s not a stretch to predict most tests we currently get in a clinic will be available with a smartphone or in at a minimum, for more invasive tests, in a retail setting within the next 10 years, maybe even 5. Testing will become even more commoditized. Whole genome sequencing will be as affordable as a monthly mobile phone bill.

In that time, there are likely to be hundreds, if not thousands of sensors in our homes. This data could have a greater impact on guiding our health day to day than clinical data does.

The democratization of assets will be our information assets in health care that we collect. We’ll need to open up access to those assets, provide ways to connect them, and enable ways to securely share them.

Counterintuitively, that’s why initiatives such as #GetMyHealthData and CMS Blue Button are so critical. Providers will need to provide seamless data access just to stay relevant in this new ecosystem.  That was apparent in my talk with athenaHealth’s COO Ed Park who said, “The strategic battlefront of healthcare is moving out of the hospital and toward retail clinics, community docs and urgent care chains.” If you can’t interoperate, it’s going to be hard to stay relevant as patients move to lower cost settings, away from hospitals and clinics, due to higher out-of-pocket costs.

When we ask for our health information, we’re not just asking for data, we’re asking for a path to our future. And that path needs to be with us, always. We’re asking for access to our future best selves, the very core of the value in health care.  Access to this information is a critical foundation to a sharing economy of health data, to a peer-to-peer, democratized health system.


To move to the next level of a health internet, to realize network effects, connecting people and their data will have to be the first step. It’s already happening over and over with cancer patients, and this trend will grow stronger as these stories are told. A few examples:

  • Dr. David Servan-Schrieber was an early pioneer, finding his own brain tumor, taking charge of his own health through his own research and sharing his knowledge through writing the book AntiCancer: A New Way of Life. There’s now a documentary I’ve assisted, The C Word, based on his work. The film shows the power of individuals to learn, connect and teach about prevention, including steps they can take outside the clinic to improve health.
  • Carrying the torch for a new generation is Steve Keating, a young MIT doctoral student in physics, who used his own health data to help diagnose and treat his brain tumor. The TEDx video by Steven Keating is my must-see presentation of the year, discussing the phenomenon of the “medical selfie” and how  Medical selfies, sharing self measurements, will become the basis of a new kind of medicine by 2026. (Dave Chase and I touch upon this “new science” in the our 95 Theses for a New Health Ecosystem.).
  • Intel’s Eric Dishman, a cancer survivor, has been a strong advocate in the data access movement. In his campaign, he has testified before the Senate HELP Committee on patient access to data, and now Intel is building the “Collaborative Cancer Cloud.” In his testimony, he declared, “It was as much a fight to get my data as to fight cancer.” Strong words.

Self-knowledge of one’s medical data and ourselves is just just getting started, these are just a few of the people demanding their ability to learn what they can from information about themselves, develop their own models, and about what they can do inside and outside the clinic to improve their odds. There are now seemingly endless stories of people sharing and improving their lives with health data, self-measurement and sharing.

Access to our data is becoming access to our future selves and our ability to thrive, and it will become a hot topic for civil rights.  Our digital selves, including data in EHRs, will increasingly affect our “real” lives, our physical selves, and I think that makes access to such data a civil right. A civil right can be defined as:

“A civil right is an enforceable right or privilege, which if interfered with by another gives rise to an action for injury. Examples of civil rights are freedom of speech, press, and assembly; the right to vote; freedom from involuntary servitude; and the right to equality in public places.”

“Does the lack of access to health data give rise to an action for injury?” If we’re blocking access to our best future selves by blocking access to information about us, the answer is, unequivocally, yes.

We must demand better. Out data will be our vehicle. More on how to get there in my next post.

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14 replies »

  1. The disruption will happen as soon as we heed the message of the JASONs: Separate the storage of personal health data from control of access to the data.

    The Digital Disruption slide does not apply to healthcare today. All of the services on the list are purchased by the customer. The services in healthcare are purchased FOR the customer. It’s unreasonable to expect an industry that’s wasting $1T / year to disrupt itself.

    To enable practice innovation in healthcare we either need to make sick people the customer (unkind and unlikely when both price and quality are completely opaque) or we need to regulate extreme transparency and the unblockable patient right to delegate access data to any one we choose.

    Fortunately, the means to do this is at hand. The Meaningful Use Stage 3 API regulations may be enough. As long as the regulators interpret the law the way the JASONs proposed, neither the EHR vendors nor our “providers” will be able to both hold our personal data and block access to it by anyone we choose.

    This issue (Can an EHR vendor or provider block any patient-authorized access to the API?) is now before ONC’s API Task Force and the Office for Civil Rights. The first test will come even before they rule when CMS releases the BlueButton_on_FHIR API to our Medicare data. Will CMS block any patient-authorized apps? If so, which ones?

    Stay tuned.

  2. If that is healthcare law, that’s not how I’ve heard rulings based on that saying. Actually, no, owning the whole thing is less important. I’m more concerned that they have the actual data that comes directly from them, labs and images, the things that can be used to build that model, at least as a first step. Still, if you look at Open Notes initiatives, the feedback seems to be widely positive for both patients and providers. So why not? https://webcache.googleusercontent.com/search?q=cache:P5OH_HlwlrgJ:www.myopennotes.org/medcity-news-amia-opening-up-records-helps-acute-patient-engagement-too/+&cd=6&hl=en&ct=clnk&gl=us

  3. Mr. Kish,

    Wasn’t trying to deride your post, as I am certainly not against the use of data (or access thereof) to assist in healthcare. But I think it depends on who is getting “uber-ized.” doctors? patients? hospitals? healthcare execs?

    Patients have always owned their own medical data. I’m a lot more worried about who else may “own” my medical info, or at least have access to it. Therefore, I don’t really want “thousands of sensors in my home” to monitor my health data. Someone gave me one of those stupid wristbands that spies on my heart rate, sleep patterns, sex life, etc., and shares it to “the cloud.” I promptly threw it in the trash.

    You indicate that blocking access to health data violates a civil right. If you mean your OWN health information (i.e., what we old farts used to call your medical record), then yes, it is a Right, via the First Amendment. But if you suggest that somehow a lack of interoperability is somehow a civil rights violation, or failure of a medical entity to provide a “seamless” portal to you, then no, sorry. While HIPAA does include a provision for patients to request an “amendment” to a medical record which is felt to be in error (as in, “I’m not allergic to codeine”) – there is no substantive “right” to access the EMR, manipulate the data, etc.

    There is a saying in healthcare law, “the patient owns the information, but the doctor owns the record.” Sounds like you want the patient to “own” it all?

  4. Actually, my cancer journey was just the cherry on my epatient sundae – after spending years observing my ‘rents be epatients, followed by my advocating for and then fully managing their care thru end of life (29 days apart at the end of ’02), I was fully embedded in the effort to make healthcare more accessible/deal-able/human. Getting cancer for Christmas 8 years ago (almost to the day) just made it clear that healthcare transformation would be my last professional pivot.

    The irony is not lost on me that I, and the countless other patient-voice experts working to turn this aircraft carrier, are paid in warm handshakes, cold bagels, and occasional airfare as we grind ourselves on the wheel of a $3T/year US industry.


  5. The glimmers of hope I see are those paving the way that I mention near the end, and people like you, Casey. It’s not accident that cancer patients are leading this charge, they have the incentive. I do think that over time, those leading the charge will educate a lot of us about the science of prevention as well as the science of care delivery. That happened for me with Anticancer, and these insane costs will drive all of use to seek low cost options that work or prevent. They are out there, and they’re just starting to get the attention they deserve.

  6. yeah we need one of those WOPRs for sure.

    I would tell ya’ll bout the time I saw one of those famous WarGames actors in my ER, but dang, that HIPAA!!

  7. Mmmkay. I’m with you, but here’s the thing.

    Ed Park’s “The strategic battlefront of healthcare is moving out of the hospital and toward retail clinics, community docs and urgent care chains” is still waaaaaay too deeply rooted in business strategy vs. human potential. IOW, no one on the ground – where people/patients are – sees the potential of the “selfie within a selfie” since healthcare is something that happens over there, to sick people, but not to me. Until, of course, I get sick, and then … I’M SICK! I don’t know how to make a decision, I just want help! And ohmigawd how much will this help COST ME?!? No one knows!! (hangs head in abject submission)

    The glimmers of light I see in this tragicomedy are coming not from the athenahealths and CMSes in the game, but from tech players with some kind of proven history of understanding how to put tech in a consumer’s hand and have that consumer go “awesome!” and start [doing whatever with it]. Apple, IBM (UNC Game Lab – ZOMG!), Dell (digital tumor board platform – whose data scientist lit up when I said “add the patient to the access list”) – some expected players (yes, of course, Apple), some surprising (IBM – who knew??).

    We – humans/people/patients/consumers/agents of change – are arrayed against an industrial mindset that makes the Pentagon look like homeless people when it comes to marshaling money and political force to preserve a status quo that guarantees an industrial revenue stream. > $3T/year is a significant amount of chedda. The people on the receiving end of that cash firehose ain’t givin’ it up without a massive fight. They got Global Thermonuclear War in their arsenal. We got torches and pikestaffs.

    “Greetings, Professor Falken. Would you like to play a game?” I’m looking forward to reading your next salvo in this skirmish.

  8. Again with the “uber-ization” of healthcare.

    Maybe I should stop being an ER physician and just be a “Surgist.”

    No, not a surgEON – just a “surge doctor” – i.e., someone who waits around, drinking coffee, watching my ED “metrics” on my computer like a crazed day trader, til the ED is crammed full of patients, then, Uber-like, I will drop in see a few seriously ill, Level 99285, (plus critical care time codes) patients, and go home.

    Get paid for 12 hrs worth of doctoring in 2 hrs. Let the NP handle all the sore throats, vag itch, back pain (x9 years), Percocet refills, and work excuses. Sounds like a plan to me.