Data Liquidity or how we can use ARRA’s $19 Billion wisely

The New York Times has a dire warning that the $19 Billion that ARRA calls to spend on electronic health records (EHR’s) could be wasted.  They bring up two valid concerns. The first is that physicians will not use EHR’s to improve the quality of healthcare, but primarily just for record keeping. The second is that the government will not require simple open standards that all comers can easily use to drive innovation and new cheaper solutions.”

It is certainly a risk and some of the answers aren’t intuitive. The ARRA act calls for meaningful use of the EHR’s and the NY Times article assumes that meaningful use is determined by improving care and curbing costs. This is of course the goal and if the EHR does a good job of real-time clinical decision support, it will undoubtedly improve care.

But it is an error to conflate physicians using EHR’s with curbing costs. To curb costs it is essential to create more ways and more choices for patients to own their computable health data thus enabling patients to use their data to get help and advice. This is usually called Data Liquidity and it empowers patients by adding choice into the equation. Put simply, EHR’s should, at the patient’s request, send the patient’s data (and it is the patient’s data after all) to their PHR (personal health record) of choice. Then, instead of being reliant on a single overworked physician to understand and interpret their data, they can have access to many tools and many people to help them stay healthy and on their own dime. History has shown that choice and competition lead to far better and more cost-effective results.

Some object to this model of patient controlled PHR’s. In the current issue of NEJM there is an article by Drs Paul  Tang and Thomas Lees suggesting that the best PHR is one tethered to the EHR. They argue that only this way can there be a shared patient record and only this way is the patient’s security and privacy be assured thanks to HIPAA. The article further contrasts the untethered PHR to the one run/managed by the doctor by suggesting that only the latter will help the patient to easily manage and understand their blood pressure and glucometer readings with intelligent doctor oversight.,This is very much a false dichotomy.

First, HIPAA does not give patients the ability to control who can see what of their data. It simply makes sure that only a doctor treating them can have access to it. But the patient has no fine grained control. Microsoft’s HealthVault, by contrast, does provide such protection. Clearly no one would use a PHR that leaked their health data so the business imperative for PHR’s to be secure is actually far greater than provider imperative.

Secondly, as the article points out, many patients see many doctors. The odds that all one’s doctors work for the same institution with the same EMR are both slim and presuppose, again, a lack of choice for the patient.

There is a much simpler solution. First, require the newly “certified” EHR’s that ARRA will pay for to share the patients Labs and Med’s and Conditions in a standard computable way with the patient’s PHR on patient request. Many countries  have long since figured out how to do this using SNOMED codes. Surely we can do the same using standard encoding’s for the Meds, Conditions, and Labs and standard XML formats like CCR and CCD to describe the patient data. Indeed many health organizations have have already done just this with Google Health such as Beth Israel Deaconess, Cleveland Clinic, Quest Diagnostics, CVS and Walgreens.

Second, provide extra rewards to EHR’s that support interoperable secure messaging using a standard way to exchange messages. Then patients can own their data, have a wide range of choices and still have an efficient way to communicate with their doctors. And a huge side benefit will be that doctors can now see the bigger picture of what is happening with their patients outside of their own practice.

All this will lead to truly collaborative medicine with a payoff that can only come from informed decision making and feedom of choice by the patients.

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5 Responses to Data Liquidity or how we can use ARRA’s $19 Billion wisely

  1. […] Bosworth recently wrote about data liquidity in health records, and he’s right on. Data liquidity means that we stop with these one-off integrations, and […]

  2. […] Data Liquidity or how we can use ARRA’s $19 Billion wisely « Adam … […]

  3. […] are starting to be drawn. Do patients have the right to fully control their PHR and to require full data liquidity & interoperability. Or must we rely on tethered PHRs where only a portion of your health […]

  4. […] the database requirements, and related infrastructure elements that will enable the data to be truly liberated. These standards will do more for the industry than any other single legislative or policy […]

  5. Excellent article, bookmarked for future referrence

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