Category: Health

Apple HealthKit and VRM

Withhealthkit-hero iOS8, Apple is releasing a pile of new capabilities for developers, such as HomeKit, CarPlay, Family Sharing and HealthKit. These don’t just bring new stuff to your iPhone and iPad. Start digging and you see a framework for personal control of one’s interactions in the world: one that moves Apple away from the norms set by Google, Yahoo, Facebook and other companies that make most of their money in the advertising business.  Explains Greg Lloyd,

Google, Yahoo and others gather correlate, analyze and use personal identity metadata including your location, search history, browsing history to monetize for their own purposes or to sell to others. I believe Apple is trying to build a counter story on security using identity and services encapsulated in devices you own. In addition to continuity, examples include OS8 MAC address randomization for WiFi localization privacy and hardware partitioned storage of iOS fingerprint data.

The italics are mine. Our devices — phones in particular — are becoming extensions of our selves: as personal as our chothes, wallets and keys. They bring new ways for us to engage with people, organizations and other things in the world. There is enormous room for growth in personal empowerment with these devices, especially if those devices are fully ours, and not the hands of advertising companies in our pockets.

Apple, one hopes, aims mainly to enhance our agency — our capacity to act with effect in the world — through our mobile devices. And they have an important advantage, beyond their gigantic size and influence: we pay them. We don’t pay Google, Facebook and Yahoo for most of what we get from them. Advertisers do.

Haydn Shaughnessy unpacks the difference in The Revolution Hidden In The Apple Health Kit :

When you do business with Google, as a consumer, you strike a deal. In return for free search you get ads and for those ads you agree to your data being collected, stored and sold on. The way Apple sees business up ahead, when you use an Apple health service, Apple manages data for you, on your terms. That is a revolution.

health_iconSo, as I’ve been digging thorugh the scant literature on Healthkit and Apple’s new Health app, I’ve looked for ways they line up with VRM principles, goals and tool requirements. Here’s what I see (√ is yes, ? is don’t know. x is no — but I don’t see any of those yet):

VRM Principles

√ Customers must enter relationships with vendors as independent actors
√ Customers must be the points of integration for their own data
√ Customers must have control of data they generate and gather. This means they must be able to share data selectively and voluntarily.
? Customers must be able to assert their own terms of engagement.
√* Customers must be free to express their demands and intentions outside of any one company’s control.

VRM Goals

√ Provide tools for individuals to manage relationships with organizations.
√ Make individuals the collection centers for their own data, so that transaction histories, health records, membership details, service contracts, and other forms of personal data are no longer scattered throughout a forest of silos.
√ Give individuals the ability to share data selectively, without disclosing more personal information than the individual allows.
√ Give individuals the ability to control how their data is used by others, and for how long. At the individual’s discretion, this may include agreements requiring others to delete the individual’s data when the relationship ends.
? Give individuals the ability to assert their own terms of service, reducing or eliminating the need for organization-written terms of service that nobody reads and everybody has to “accept” anyway.
? Give individuals means for expressing demand in the open market, outside any organizational silo, without disclosing any unnecessary personal information.
? Make individuals platforms for business by opening the market to many kinds of third party services that serve buyers as well as sellers
? Base relationship-managing tools on open standards and open APIs (application program interfaces).

VRM Tools:

√* VRM tools are personal. As with hammers, wallets, cars and mobile phones, people use them as individuals,. They are social only in secondary ways.
? VRM tools help customers express intent. These include preferences, policies, terms and means of engagement, authorizations, requests and anything else that’s possible in a free market, outside any one vendor’s silo or ranch.
√ VRM tools help customers engage. This can be with each other, or with any organization, including (and especially) its CRM system.
√ VRM tools help customers manage. This includes both their own data and systems and their relationships with other entities, and their systems.
√* VRM tools are substitutable. This means no source of VRM tools can lock users in.

That’s a wishful reading, and conditional in many ways. The *, for example, means “within Apple’s walled garden,” which may not be substitutable. Greg thinks this isn’t a problem:

…many people value a safer, more consistent, curated, and delightfully designed user experience to a toolkit… I want my personal information and keys to access heath, home, car, family information stored in a walled garden in a device I own, with gated access looking in for Apps I authorize, and freedom to search, link and use anything looking out. Apple appears to be develop its stack top down, starting from a vision of a seamless user experience that just works, giving developers the extensions they need to innovate and prosper.

As a guy who favors free software and open source, I agree to the extent that I think the best we can get at this stage is a company with the heft of an Apple stepping and doing some Right Things. If we’re lucky, we’ll get what Brian Behlendorf calls “minimum viable centralization.” And maximum personal empowerment. Eventually.

I am also made hopeful by some of the other stuff I’m seeing. For example, Haydn quotes this from @PaulMadsen of Ping Identity (both of which are old friends of VRM):

Apple is positioning its Health app as the point of aggregation for all the user’s different health data, and Health Kit the development platform to enable that integration.

In this I hear echoed (or at least validated) Joe Andrieu‘s landmark post, VRM — The User as a Point of Integration.

I also think Apple is the only company today that in a position to lead in that direction. Microsoft might have been able to do it when they dominated the desktop world, but those days are long gone. Our main devices are now mobile ones, where Apple has a huge share and great influence.

Apple is also working with Epic Systems (the largest B2B tech provider to the health care business) and the Mayo Clinic (the “first and largest integrated nonprofit medical group practice in the world”). Out of the gate this has enormous promise for bringing health care systems into alignment with the individual, and for providing foundations for real VRM+CRM connections.

Of course we’ll know a lot more once iOS 8 gets here.

Meanwhile, some questions.

  • Can data gathered in the Health app easily flowed out into one’s non-Apple personal cloud or data store, and then flowed into the health care system of the individual’s choice?
  • In more concrete terms, would a UK citizen with integrated data in her Health app be able to flow that data into her Mydex personal data store, and from there into the National Health Service?  I don’t know, but I hope Mydex, Paoga, Ctrl-Shift and other players in the UK can find out soon, if they don’t know already.
  • Likewise, for the U.S., I would like to know if data can flow, at the individual’s control, back and forth from one’s Personal data vault or one’s Bosonweb or Emmett personal cloud and one’s Apple-hosted health data cloud (or a self-hosted one connected to one’s Apple cloud. And if data can easily flow from those to doctors and other health care providers. In Personal’s case, I’d like to know if data can flow through the Fill It app, which would be a handy thing.
  • For Australia and New Zealand, I’d like to know if the same thing can be done for individuals from their MyWave, Welcomer, Geddup or Onexus personal clouds. I’d also like to know if data in the Health app can be viewed and used through, for example, Meeco‘s app. And what are the opportunities for any of those companies, plus 4th Party, Flamingo and other players, to participate in an ecosystem that has any and all of the companies just mentioned, plus Medicare (the Australian national health service, not to be confused with the American one just for persons 65+)?
  • Same questions go for Qiy in the Netherlands, CozyCloud in France, and many other VRooMy developers in other places. And what’s the play for the Respect Network, which brings consistencies to what many of the developers listed above bring to the market?

In all cases the unanswered question is whether or not your health data is locked inside Apple’s Health app. Apple says no: “With HealthKit, developers can make their apps even more useful by allowing them to access your health data, too. And you choose what you want shared. For example, you can allow the data from your blood pressure app to be automatically shared with your doctor. Or allow your nutrition app to tell your fitness apps how many calories you consume each day. When your health and fitness apps work together, they become more powerful. And you might, too.”

Sounds VRooMy to me. But we’ll see.

 

Patient-driven health care

VRM has been a cause in health care far longer than the term Vendor Relationship Management has been around. (For ProjectVRM, that’s been since late ’06.) And, as a category within VRM, health care could not be larger, more personal, or more contentious. Just yesterday Paul Krugman posted a column titled Patients are not consumers. Can’t get much more VRM than that.

Lately I’ve been urged to front-burner health care as a VRM topic, and I’m obliging here by recommending it as a topic for IIW#12, coming up the first week of May. The top urgers have been , Jon Lebkowsky and “.

Brian has been active on the ProjectVRM list, and his latest occupation — CTO of the — follows several years of involvement with and the Alembic Foundation, both at the forefront of patient-driven health care. Here’s a talk Brian gave last summer at OSCON, and some more stuff about Alembic.

Jon has been organizing meetups and conference calls on VRM and health care, as well as taking a lead role on behalf of the topic on the ProjectVRM list. ProjectVRM and e-Patients is a good sample. This slide deck also deals with the issues.

Adrian writes HealthURL, takes the VRM position in his postings on The Health Care Blog, and has been active in our workshops at Harvard., hosted by the This post, for example, has five helpful links (and lots more where those came from):

The debate between provider-centeredand patient-centered health information exchange is still very much with us. Recent progress with the Direct ProjectBlue Buttonand Kaiser’s donation of terminology suggest a trend toward simplicity and open-source collaboration as essential catalysts for health information exchange.

Dave recently gave an outstanding talk at TEDx in the Netherlands. (Pull quote: “patient is not a third-person word.”) Dave’s blogroll is also a trove, so I’m dropping it right in here:

Dave and I got on each other’s radar several years ago after he picked up on my Patient as a Platform post. Everything I wrote there still stands. What’s changed is my own hope for some progress on this whole front. In the past I avoided health care as a VRM topic, for two reasons: 1) I saw other people carrying the ball very well, and 2) I wanted to see results in my lifetime. Thanks to work by people like the four mentioned here, I have hope for that.

Just got an email from Dave, with these additional notes:

The monster-size issue in healthcare is that we’re pre-Copernican-shift.

The establishment completely doesn’t get it:

  • Feb 2011 conference session at HIMSS, describing the shift as if it were new: http://www.himssconference.org/career/careerpavilion04.aspx.
    • HIMSS is the huge health IT association – 30,000 members attend the conference.
    • But here is a 2007 book that cites the shift, and Microsoft cited it often when HealthVault launched in late 2008 / early 2009.

Our pre-Copernican status makes it really hard to pick up your marbles and switch vendors. Your marbles, of course, is your carcass plus your records about it.

(Another factor is the relationship with a trusted physician, who often has relatively little mobility.)

Liberating our records:

I mentioned the Blue Button “download my data” initiative, which is the first truly disruptive effort to liberate our data. I say “disruptive” in the Christensen sense – it gets the data out of the hands of the currently dominant party (the suppliers – docs and hospitals) so innovators can pounce on it and find things to do with it.

At the Markle Foundation meeting last May where Blue Button was conceived, one question from the establishment was “Do people really want this?” The latest stats from the VA say yes. An email from Rachel Lansford, special assistant to VA CTO Peter Levin:

We measure unique registrants and the number of download requests they’ve made. We do collect these stats from beginning of Blue Button in August 2010.

Here are the latest stats as of April 16, 2011:

  • Unique total registrants for VA’s Blue Button: 218,142 (8/29/10-4/16/11)
  • Download requests: 473,510 (8/29/10-4/16/11)

n  PDF downloads: 40,858 (03/19/11-04/16/11) (new feature in March release)

VA is just one Federal partner offering Blue Button. DoD, who recently updated their [Blue Button dataset] to include lab results, and the Centers for Medicare and Medicaid Services offer the Blue Button to their beneficiaries too. The total unique registrants for Federal-wide is about 300,000 users.

(She says August; it was announced publicly in October.) 300,000 users in 6-8 months? I’d say some people are interested. And note that there are multiple downloads (473k downloads, by 218k unique users.)

Just the start

Mind you, downloading a blue button dataset is just the beginning, because it’s far from a comprehensive medical history. But it’s a start – the first start – at liberating a large dataset. As I said in a talk in DC last June, to innovators, data is fuel. And I expect this is the start of a new ecosystem.

As a trivial first example, see the TEDMED talk by Wired editor Thomas Goetz on redesigning medical data: http://www.ted.com/talks/thomas_goetz_it_s_time_to_redesign_medical_data.html, and this fabulous Wired article from November: http://www.wired.com/magazine/2010/11/ff_bloodwork/all/1

Today’s norm is totally not patient-centered: rows of stupid, unhighlighted data, with no call to action, no nothing. It’s easy to miss anything important, and disempowering to all (including the busy physician). The redesigns Goetz showed in the video (e.g. around 11:15) and in the Wired article use ordinary good design to draw attention to what you need to know.

The only reason we’re all not getting this kind of result today is because we’re pre-Copernican shift. The people at the center of the universe today don’t mind getting what they’re getting, and the rest of us.

Please let me know other links and sources I should put on this list.

 

 

 

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