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Healthcare data interoperability pain

Data without interoperability =  pain.

What is happening in the US healthcare space is fascinating as stimulus funds (or what they call in the Middle East – “baksheesh”) are being paid to doctors to acquire an Electronic Health Records system that has “meaningful use”. The term “meaningful use” is vaguely  defined in the stimulus bill as programs that can enable data interchange, e-prescribing and quality indicators.

Our hospital recently spent millions on a emr that does not integrate with any outpatient emr. Where is the data exchanger and who deploys it? What button is clicked to make this happen! My practice is currently changing its emr. We are paying big bucks for partial data migration. All the assurances we had about data portability when we purchased our original emr were exaggerated to make a sale. Industry should have standards. In construction there are 2×4 ‘s , not 2×3.5 ‘s.
Government should not impinge on privacy and free trade but they absolutely have a key role in creating standards that ensure safety and promote growth in industry.
Read more here:  Healthcare interoperatbility pains

Mr Obama’s biggest weakness is that he has huge visions but he can’t be bothered with the details so he lets his team and party members hack out implementations, which is why his healthcare initiatives are on a very shaky footing – as the above doctor aptly noted.  But perhaps something more profound is at work. The stimulus bill does not mention standards as a pre-requisite for EHR, and I assume that the tacit assumption (like many things American) is that standards will “happen” due to the power of free markets. This is at odds with Mr. Obama’s political agenda of big socialistic government with central planning. As the doctor said: “government absolutely (must) have a key role in creating standards that ensure safety and promote growth in industry”.  The expectation that this administration set is that they will take care of things, not that free markets will take care of things.  In the meantime, standards are being developed by private-public partnerships like HITSP – enabling healthcare interoperability

The Healthcare Information Technology Standards Panel (HITSP) is a cooperative partnership between the public and private sectors. The Panel was formed for the purpose of harmonizing and integrating standards that will meet clinical and business needs for sharing information among organizations and systems.

It’s notable that HITSP stresses their mission as meeting clinical and business needs for sharing information among organizations and systems.   The managed-care organizations call people consumers so that they don’t have to think of them as patients.

I have written here, here and here about the drawbacks of packaging Federal money, defense contractors and industry lobbies as “private-public partnerships”.

You can give a doctor $20k of Federal money to buy EMR software, but if it doesn’t interact with the most important data source of all (the patient), everyone’s ROI (the doctor, the patient and the government) will approach zero.

Vendor-neutral standards are key to interoperability. If the Internet were built to HITSP style standards, there would be islands of Internet connectivity and back-patting press-releases, but no Internet.

The best vendor-neutral standards we have today are created by the IETF – a private group of volunteers, not by a “private-public partnership”.

The Internet Engineering Task Force (IETF) is a large open international community of network designers, operators, vendors, and researchers concerned with the evolution of the Internet architecture and the smooth operation of the Internet. It is open to any interested individual. The IETF Mission Statement is documented in RFC 3935.

However – vendor-neutral standards are a necessary but insufficient condition for “meaningful use” of data.  There also has to be fast, cheap and easy to use access in the “last mile”.  In healthcare – the last mile is the patient-doctor interaction.

About 10-15 years ago, interoperability in the telecommunications and  B2B spaces was based on an EDI paradigm with centralized messaging hubs for system to system document interchange. As mobile evolved into 3G, cellular applications made a hard shift to a distributed paradigm with middleware-enabled interoperability from a consumer handset to all kinds of 3G services – location, games, billing, accounting etc running at the operator and it’s content partners.

The healthcare industry is still at the EDI stage of development – as we can see from organizations like WEDI and HIMSS

The Workgroup for Electronic Data Interchange (WEDI)

Improve the administrative efficiency, quality and cost effectiveness of healthcare through the implementation of business strategies for electronic record-keeping, and information exchange and management...provide multi-stakeholder leadership and guidance to the healthcare industry on how to use and leverage the industry’s collective technology, knowledge, expertise and information resources to improve the administrative efficiency, quality and cost effectiveness of healthcare information.

What happened to quality and effectiveness of patient-care?

It is not about IT and cost-effectiveness of information (whatever that means). It’s about getting the doctor and her patient exactly the data they need when they need it.   That’s why the doctor went to medical school.

Compare EDI-style message-hub centric protocols to RSS/Atom on the Web where any Web site can publish content and any endpoint (browser or tablet device) can subscribe easily. As far as I can see, the EHR space is still dominated by the  “message hub, system-system, health-provider to health provider to insurance company to government agency” model, while in the meantime, tablets are popping everywhere with interesting medical applications. All these interesting applications will not be worth much if they don’t interact enable the patient and doctor to share the data.

Imagine the impact of IETF style standards, lightweight protocols (like RSS/Atom) and $50 tablets running data sharing apps between doctors and patients.

Imagine vendor-neutral, standard middleware for  EHR applications that would expose data for patients and doctors using an encrypted Atom protocol – very simple, very easy to implement, easy to secure and with very clear privacy boundaries. Perhaps not my first choice for sharing radiology data but a great way to share vital signs and significant events like falling and BP drops.

This would be the big game changer  for the entire healthcare industry.  Not baksheesh. Not EDI. Not private-public partnerships.

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One thought on “Healthcare data interoperability pain

  1. Hi Dan

    I think you’re missing what we all know -> politics – the balance of power is still very much in favor of the big players.

    Let’s take for example the big pharmaceutical companies like GSK and Pfizer. If they can get past the regulatory (real or perceived) limitations, they can provide social media services for doctors and for patients to use medication more effectively which in return provide the pharmas with important feedback on actual effectiveness.

    While pharmaceutical companies are trying out social media with patient/consumer and healthcare provider (HCP) communities, this engagement is limited, especially outside of the US, where the rules of direct-to-consumer marketing in healthcare are restrictive. It seems that most pharma companies would favor new regulation that would allow easier communication with consumers and patients on the web. However, it is less clear whether these views are shared by HCPs.

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