“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness…”
–Charles Dickens, A Tale of Two Cities.
“Data, data, everywhere, but…”
With HealthDataPalooza just a month away, it’s time to start asking: What’s the state of health data in 2015?
(And wonder, what cool things have happened with Open FDA since it was announced last year, and what’s due to be released or launched this year?)
Apple watches rolled into mailboxes starting last week, ushering in a new era of quantified self and the behavioral economy. The watch is not so much about a little phone screen as it is a collection of sensors on where you are, what you’re doing, with whom, and the beginnings of measuring the internal state of our bodies. An Apple Watch tear-down by 9to5mac reveals that measuring blood oxygen may be on the horizon.
A million people in the U.S. have bought the Apple Watch. A million people is a lot for big data around health, not to mention a million built-in fitness trackers and movement sensors—closely linked to purchases through Apple Pay.
Retailers are set to capitalize on all this information. The more data, the more sales and the more engagement. They understand the connection between data, engagement, behavior and sales.
Let’s hope it also has an impact on health. This is what retail health care might look like, particularly among millennials, driving them toward lower-cost care centers with health measurements, reminders and directions toward the right place at the right time.
Meanwhile, IBM, J&J, Apple and Medtronic announced a deal at HIMSS15 bringing together health tracking, patient engagement, a medical device Internet of Things, and Watson’s AI to make predictions. Part of the deal with Apple is to provide Watson as a service to Apple’s HealthKits and ResearchKit, which gives users the ability to send information from participants to researchers, ushering in a new era of smart phone clinical trials.
LabCorp announced recently that they’ll be going direct to consumer. So, in 20 states for now, you can order your own tests directly from LabCorp without approval from a physician.
With all this happening, we’re seemingly close to drowning in an ocean of health data. Providers, be ready. Each of us is becoming, or has the potential to become, a clinical trial of one (pdf).
As consumers, we can now access a wealth of information about ourselves if we want to pay for it. Mark Cuban is suggesting we get quarterly blood tests if we can pay for it. We can get our genomes analyzed if we can pay for it.
Still, by and large, providers have much less interest in this data because it doesn’t fit into the normal clinical context. Docs don’t have studies on consumer-generated data to point to what it can do. For doctors, patient-generated data without a patient presenting a health symptom is like getting the dessert menu when you sit down for dinner. It might sound great, but you’re not quite sure if it’s relevant at the moment, and you certainly might not need it. Showing a physician your problem-free medical data is nice, but a medical selfie isn’t necessarily all that interesting to a physician looking to make a clinical decision.
Big questions remains on who will use all this data, who owns it, where it will live and how will it be shared to generate the most real value? And is it too much? On one hand, times are good, we can find out anything we want if we have the money. There’s personal data everywhere, probably more places than we’d like to realize.
On the other hand, clinical data still doesn’t move much between provider to provider or from provider to patient. The path to get to interoperability looks ever more steep.
We’re still in a data desert within the medical establishment, and even further out for those without the disposable income to spend on tests outside the health system or to even pay to access their data inside the health system.
We can’t move data very well in the system and we can’t get data out of it. Congressional testimonies and widespread reports have offered recent evidence. For the most part, data doesn’t flow in any meaningful way from provider to provider nor from provider to patient.
To make it even more difficult, ONC recently suggested relaxing the Meaningful Use 2 rules around providing patients data, such that providers would only need to supply data to one individual during the year to qualify. Former national Health IT coordinator Farzsad Mostashari and multiple patient advocates have called for a day of action to request medical records. The Society for Participatory Medicine and many others have started the “No MU without ME” campaign. Look for hashtag #nomuwithoutme.
Access to health records for patient is literally reaching crisis proportions. By and large, physicians and health systems are not investing in accessing or sharing data beyond what’s in Meaningful Use 1. Yet smart large retailers like Walmart and Walgreens are investing heavily in putting consumer health data to work in various forms.
A common refrain has been that in regards to adapting today’s EHRs to value-driven care and better interoperability is “we’re fixing the airplane while flying,” but what people want in a consumer-driven world is autonomy. People want their data to follow them.
“Working with individual records in today’s commercial-sized EHRs is like trying to land a 747 on a driveway and park it in a one car garage. What consumers want and need instead is a nimble delivery drone that can land its data almost anywhere.” (hat tip to Carla Berg, @synergista)
The answer has to be with how information will be owned and organized around the patient. Just as Peruvian Economist Hernando de Soto calls for property systems as a means for better trade, sharing and economics, I believe a similar answer lies in the ownership of health data. I’m not alone. David Brailer, the first national coordinator for Health IT, recently went on record in the Wall Street Journal saying patients should literally own their records, that they are not just records, they are vital signs.
Eric Topol is calling for a global store of health data. How can we pull these two concepts together? How do we provide ownership and autonomy much like we own our cars? These will be core questions in the coming years for health IT to provide real value and outcomes for consumers.
What to do if you are a hospital or health system CIO?
For starters, it’s time to start realizing that your business is becoming retailed, and, like any retailer, your ability to understand the behavior and thinking of your customers outside of your facility will be critical for success. Twenty percent of Medicare payments are now made physicians who have enrolled in alternative-payment programs.
Some enlightened organizations are taking steps forward to bring clinical, claims and patient-generated data together, but all will have to do this eventually to compete. Where is your Apple Watch app or at least your patient-generated data strategy? How will you use it to attract, engage, maintain and improve outcomes of your customer base?
You have to wonder: if data is the new oil, and it can’t flow through, in, or out of EHR systems, will it simply flow around them? If you’re a health system moving to fee for value, it’s past time to start pulling all health-related data into a coherent whole. It’s time to start thinking like a retailer.
Note: I’ll be discussing these topics and more as moderator of a health data innovation in value-based health panel this Thursday, May 7th at Colorado’s Prime Digital Health Summit. I’ll be talking with leaders of COHRIO, CIVHC (the Colorado APCD), Lumiata, and more.
Also, if you like the car analogy, check out a great piece on a similar idea around train transportation networks vs. individual automobiles at the turn of the last century compared to modern HealthIT, check out Bob Coffield’s congressional testimony from 2009. It’s brilliant.