Update March 24: I’m retitling this post, and putting it on hold, pending resolution of important concerns raised by other members of our Society for Participatory Medicine. In particular, see Adrian Gropper’s posts on The Health Care  Blog. This is almost a retraction, pending whether CommonWell changes its position and actually becomes patient-driven. If not, I suspect they’re being disingenuous and I’m outahere.

In a comment on THCB on 3/21 Gropper summarized last week’s Tweetchat (hosted by SPM) thus:

In last night’s Tweetchat, we had participation from 3 of the 5 founding companies, including two key architects of BlueButton+, a lawyer, and many Society for Participatory Medicine members.

Here’s my summary:
– The people involved in CommonWell are top-notch, honorable and experienced
– CommonWell does not consider “Gimme My DaM Data” or patient engagement a priority
– CommonWell says they will involve patients in governance but this is meaningless if it’s not an open standards process
– CommonWell will not use an open standards process – this means there’s no open forum for us
– CommonWell is “going for results” with provider-to-provider communications as their priority
– Even though they helped create BlueButton+, CommonWell is not committed to using it

For now, the bottom line is that we need an open forum that shadows everything CommonWell does and adds the e-patient perspective for all to see. This forum therefore needs to be open to the world.

This is how open standards evolve.

Adrian knows much more than I (as do many others) about the health IT industry, though I’ve seen similar efforts in other industries. So his remark here gives me concern, too:

To maintain an industry that derives 60% of revenues from interface and installation costs, CommonWell is designed to overlap and undercut the efforts of state Health information exchanges.

My view is that the entire reason for the existence of the data is to accomplish care for sick people, and I see no moral ground for in any way withholding any of the data within vendor walls. I mean, we’re talking about parents’ ability to participate in care of sick kids! And comparable family situations. State health information exchanges, designed by our government to benefit citizens (not vendors), are what we need.

I know a massive industry has been built up around processing medical data, but that industry isn’t the reason the data exists. Sick family members are the reason.

Until this is resolved with a clear emphasis on letting patients help – a priority on letting patients help, on creating an open ecosystem for development of truly patient-centered tools – then I withhold the approval I gave in this post.

Now here’s the original post, when CommonWell was first announced at HIMSS. This is the potential I saw, which I still want.

___________

See important update added below about Epic, 3:45pm ET the next day.

A quick note – mark my words, this is important –

At the big HIMSS health IT conference, six vendors of electronic health records have announced that they’ll be collaborating to share data as the Commonwell Health Alliance. That’s your data, our data, your family’s data.

The members are Cerner, McKesson, Allscripts, athenahealth, Greenway Medical Technologies and RelayHealth. Significantly missing is the Big Dog in the field, Epic, which is notoriously “all about us,” i.e. themselves.

Of course all the lesser dogs have a motivation in this – to band together and try to knock Big Dog off the top of the mountain.

Important update next day: Thanks to SPM member Brian Ahier for circulating a link to this article in which Epic says they weren’t invited to join CommonWell. Epic also says CommonWell is “yet another distraction,” a competitive tactic by their rivals.

Read about CommonWell here. Top EHR vendors join CommonWell Alliance to boost interoperability

My take: Market forces are starting to emerge. If underdog vendors can combine offer something the dominator doesn’t, that’s free enterprise working!

I hope they’ll also compete on usability.

Update the next day: Someone, please, confirm or correct the data sharing item in this paragraph:

 

I’ve often heard that Epic can be a royal pain to use, in addition to their policy of favoring data interchange but only with other Epic systems. (As Matron Mama Morton sang in “Chicago,” “You be good to Mama, Mama’s good to you.”)

Personally, I want the system my doctors and nurses use to be good for them to use and all about getting my frickin data to my doctors, wherever they are.

(I spoke about the usability issue in 2009, in “Over My Dead Body: Why Usability Matters to Patients.” Slides & video link here.)

I’ve seen this movie play out: A quarter century ago(!) I gained a few tidbits of experience about overthrowing the dominator, when Microsoft and Apple (then mortal enemies) teamed up against Adobe, then the Big Dog of PostScript. Adobe, always claiming the “openness” of PostScript, steadfastly refused to release the “Type 1” format for high quality PostScript fonts. MS and Apple said “too bad you feel that way” and standardized both operating systems on Apple’s “Royal” font format – which they renamed TrueType.

Adobe’s founder ended up in tears at an industry conference, announcing he’d release the Type 1 specs.

We shall see how this one plays out.

Long term outlook: I wonder who will be the first patient to sue a vendor for failing to transfer data that they knew could have prevented a death.

Here’s hoping CommonWell members get it done and quickly demonstrate real clinical value of moving data to the point where it’s needed. In my view, anything less is obstruction of services, obstruction of care. Give us our data!

 

 

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