It’s a busy time in Washington, DC. June 3 marks the Datapalooza and begins a week of cheering and reflection on the success of federal initiatives designed to improve health while reducing cost. This year, the big claim is “information following patients” – a combination of federal Stage 2 Meaningful Use regulations, federal Health Information Exchange guidelines and federal open pricing data policies. We’re surely beyond 1,000 pages of federal initiatives around health data and the policy fog seems to be getting thicker every day. The Independent Purchase Decision Support Test is my beacon for whether we’re headed in the right direction.

Here’s a quote from the Meaningful Use Implementation Guidelines to Assure Security and Interoperability just released by ONC:

“In effect, HISPs are creating “islands of automation using a common standard.” This will hamper information following patients where they seek care―including across organizational and vendor boundaries―to support care coordination and Meaningful Use Stage 2 requirements.”

How will “information following patients” improve health while reducing cost?

It all depends on where the patient goes to get what. Not surprisingly, federal Accountable Care Organizations and related accountable quality contracts with private payers are exactly about where the patient goes too. The difference between these health reform innovations and the old managed care approach is supposed to be the patient’s ability to choose where to go for a healthcare service. Will Stage 2 and the new federal health information exchange implementation guidelines actually lead to effective patient engagement or is it time to “reboot” the HITECH incentives as some have suggested?

The Independent Purchase Decision Support Test cuts through the techno-jargon and paternalistic framing and goes straight to the heart of the policies that influence the physician-patient decisions to drive health care quality and cost. This the essence of patient engagement and the place where the money in healthcare is actually spent.

If information is to follow the patient, the patient must have practical, independent and informed choice when making purchase decisions. The physician that places the orders needs to be accessible to the patient at the critical time when referral, medication and treatment decisions are made. The information available to the physician and the patient at that time is too important to be subject to exclusive control by an institutional EHR.

Are current federal policies sufficient to get independent purchase decision support to the patient and the physician? Can any physician using a Stage 2 EHR send a coded digital order to a patient-directed destination (including any PHR or family advocate here or abroad) using the Direct protocols and the proposed federal Guidelines? I honestly can’t tell, so I’m inventing a practical test and hoping our regulators will help.

The Independent Purchase Decision Support Test is very simple. Let’s use an MRI order for knee pain as the example:

  • When I sign the HIPAA Notice of Privacy Practices for my doctor, I can specify any Direct address whatsoever as my independent decision support “Agent”.
  • When I schedule my doctor visit for knee pain a C-CDA is sent to the Direct address that I specified as my Agent.
  • When the doctor orders an MRI in her EHR, another C-CDA is immediately sent to my Agent.
  • My Agent is able to scan the difference between the last two C-CDAs. That difference includes standard codes for my “Knee Problem” and a “Knee MRI”.
  • My Agent looks up the cost of the MRI and my specific out-of-pocket expense relative to my specific insurance situation and provides two local alternatives for imaging centers.
  • My Agent looks up the risk of getting an MRI for my knee problem and tells me there’s a 50% risk of ending up with an unnecessary arthroscopy if I get the MRI before waiting 3 months.
  • My Agent sends me a text message with the out-of-pocket costs and risks of the proposed order.
  • My Agent sends my doctor the same information, with links to references, as a Direct email right into the doctor’s Stage 2 certified EHR.
  • The sequence above is not science fiction and IBM’s Watson is probably overkill as my Agent. What I need is an Agent that’s independent of my “provider” institution EHR and communicates with that EHR using the Stage 2 guidelines without any interference from the EHR vendor or the “provider”. It’s my choice who gets the Direct messages, it’s my choice if I want to ask my doctor about the alternatives and it’s my doctor’s choice to open up or ignore the Direct messages I send.

    Unless the physician is allowed to use clinical decision support tools independently of the provider organization, medicine as profession will be diminished. Unless the patient is able to receive decision support that is physician-led but strictly independent of the provider organization, then the information is leading patients rather than following. The spirit of accountable care and, to that extent, the success of our current strategy for health reform hang on this simple distinction.

    Will Stage 2 MU and the federal health information exchange guidelines actually make independent purchase decision support possible? Will Medicaid-funded state health information exchanges and VA / DoD EHRs give patients immediate access to our own C-CDAs before, during and after a physician encounter? It’s not likely unless our federal and state officials support The Independent Purchase Decision Support Test as a policy that all of us can understand.

    Adrian Gropper, MD is the first Chief Technoiogy Officer of Patient Privacy Rights,  participates in Blue Button+, direct secure messaging governance efforts, and the evolution of patient-directed health information exchange.

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    3 Responses for “The Independent Purchase Decision Support Test”

    1. Keith says:

      Interesting concepts – Patient Centric Health Data

      There is always a tension between privacy and aggregation of data. For example: Sexually transmitted diseases like HIV – sensitive information that is important to know for public health reasons.

      However, patients can clearly benefit from having their own health data (both clinical and billing/costs) at their “fingertips.”

      (What is a C-CDA?)

      • A mandate for Meaningful Use (the federal electronic health record incentive payments), the C-CDA is a standardized and coded summary of a patient’s current health status. It includes Problems, Tests and Results, Medications, Allergies, doctor and insurance information. It also includes Orders. It generally does not include cost information. Cost information is available from the insurance company in paper Explanation of Benefits (EOB) mailings and online in Blue Button format. The link between the C-CDA and the EOB is through standardized procedure codes. Put these together and, voila, you know what things could or should cost you out of pocket.

    2. Carla Berg says:

      I love this “test” Adrian. The MRI example makes the message clear and the need for autonomy clear across the whole ecosystem of shared decision makinc. I would not have thought about EHR and #hcit in these terms if you hadn’t pointed it out. Thanks!

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