Revised: *could have been* the biggest HIMSS news for e-patient families: CommonWell Health [data] Alliance

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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Comments

8 Responses to “Revised: *could have been* the biggest HIMSS news for e-patient families: CommonWell Health [data] Alliance”

  1. Jonathan Bush’s comments in the webinar really struck me. See 8:30. https://event.webcasts.com/viewer/event.jsp?ei=1014039
    “We get shoved a thing”… “Biggest problem in health care is not about the cost but lack of expression of our humanity.” Lot’s of good-natured ribbing among the CEO’s. Entertaining.

    A few government critiques in the commentary. But also some props to ONC efforts. Standards like the Direct project were mentioned specifically.

    Nice to see vendors stepping up to adopt the standards. Still, it sounds like the data will not be processed or normalized much. CommonWell will not replace what HIE vendors do for true coordination of care. Mostly setting up a strong national identification system and record locator service.

    How will health systems explain this to people? And get consent.

    Great name for the alliance. “Common” – it’s a commons for all of us. “Well” – it will keep us healthy.

    • Adrian Gropper, MD says:

      The press conference, my private conversations with the principals, the Tweetchat with 3 of 5 founders, and the CommonWell website are completely consistent. CommonWell is ignoring federal and state initiatives and creating a national scale patient ID and record locator service without patient access or an open process.

      I think they are doing this to protect a very lucrative business model that mines our data and commoditizes physicians. This is a preemptive strike on both patient engagement and state-level transparency initiatives to drive health reform.

  2. David Harlow says:

    Promoting greater interoperability of electronic health records is one of the goals of the meaningful use regulations. Unfortunately, because of a combination of factors the standards for interoperability leave something to be desired, both in the stage 2 regulations and in the draft stage 3 standards. One factor is the tight deadline under the law for achieving meaningful use, and the other is the determination of the federal government to get as many folks qualified for meaningful use incentive payments as possible — both factors tend to reduce the strength of the criteria against which EHR systems are judged.

    The Direct project and other initiatives can already point to some success in this arena.

    More meaningful success in this arena, however, has been left up to individual EHR vendors. The development of this new alliance is not, strictly speaking, in response to a regulatory requirement or deadline. So the question arises: Why now? The answer is that the EHR vendors must see a competitive advantage in banding together in this way, and this changed view of the world may be credited, in part, to the demands of patients (and clinicians) for interoperable EHRs and all the benefits that are supposed to flow from their ubiquitous appearance.

    Let’s not forget that one revenue stream for cloud-based EHR vendors may be the licensing the use of de-identified patient data (license fees to be shared with, or perhaps retained entirely by, providers). And let’s not forget that one source of the growth in our collective knowledge, and improved evidence-based medicine, will be the licensed use of such data by third parties who aggregate and analyze data extracted from EHRs.

    Bottom line: it appears to me that the EHR vendors are acting based on a multiplicity of motives; it is gratifying to know that at least one of these motives is related to market demands generated by consumers.

    • For those who don’t know, David Harlow (who commented above) is one of the savviest well-motivated people I know in this area. He’s the Policy Chair for our Society and really understands both what the regulations boil down to and how it’s unfolding in reality. Both of those are beyond my capacity, so I put a lot of stock in what he says.

      David, I’d LOVE to see you write a post about what people are achieving with the Direct Project.

  3. Martin says:

    I work for one of the big companies in the CommonWell alliance. Many of us in the vendor community are patients, too, or have loved ones who are. To a person, every colleague I know wants interoperability – and this extends to the top of the company as well. We have donated thousands of lines of open source code to Direct, and we are super excited about this alliance.

  4. Jeanine says:

    I don’t know much about EHR and all the progress that has been made. However, I do know that I need to learn more about it and I have an outsiders’ point of view to offer.

    Regardless of what patient access to the CommonWell alliance would turn out being, people need to be provided with an reliable, trusted internet source regarding Health Care.

    I’ve been reminded that most information found on the internet, including health care info just isn’t coming from a reliable source. Sure there are sources available out there, but if nobody tells you where to look, or leaves out the reliability factor…the question then becomes “How do people find the (reliable, of course) information needed about their health care?”

    Ease of accessibility is another factor…enough ease for the basic inexperienced users to fail to have issue using yet also capable of not losing the intruigue of the most IT savvy clinicians.

    The scary idea is, is that all of this is just the tip of the iceberg. A series of confidential strains of information regarding patients lives is what this is all about. IT security to me doesn’t even seem to be able to support this kind of technology…”Can such patient health records truthfully be kept confidential?” Or would being a part of the EHR system mean relinquishing those rights?

    Seems to me like there are many kinks that are in need of straightening out first…but as I stated, I do still have a great deal of research on the subject to do.

  5. [...] Meanwhile, with perhaps some dissent on the ranks of the Society for Participatory Medicine via it’s house organ e-Patients.net, @ePatientDave has a slightly less cantankerous view on the upside of the CommonWell Alliance in Biggest HIMSS news for e-patient families: CommonWell Health [data] Alliance. [...]

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