Personal health record: it’s about the feedback loop

In my basic electronics college course, the classic lab that always got the teaching assistants laughing was the robotic arm. The task seems simple: build a circuit that measures the amount of weight carried by a small robotic arm and activates its motor to balance out the weight. Inevitably, within minutes, robotic arms throughout the lab are oscillating back and forth at accelerating speeds, catapulting their small weights across the lab. A few minutes later, the robotic arms are adjusted, and they no longer respond to input, drooping at the slightest weight, dropping it on the floor.

What we easily forget – because our bodies and brains do this for us automatically – is the need to establish a sufficiently strong, but dampened, feedback loop. If you overcompensate for the weight, then reverse the overcompensation when you realize you overshot, and so on and so forth, the pendulum keeps swinging further and further away from the stable equilibrium point. If you underreact, then you drop the ball. The same goes for information system design: proper feedback loops are crucial for quality control.

A recent Boston Globe article describes how the BIDMC shipped claims data (the codes doctors send to your insurance company for billing purposes) to Google Health, and how some patients discovered that this data was really, really odd. The reaction by the BIDMC has been nothing short of exemplary in working to rectify the situation, except maybe for the fact that billing codes were shipped in the first place, something a number of folks in the industry already knew to be problematic.

But I think this whole discussion misses the important point that e-patient Dave makes:

Then imagine that one day you were allowed to see the records, and you found out there were a whole lot of errors, and the people carefully guarding your data were not as on top of things as everyone thought.

The point here is that putting the patient into the loop – the data feedback loop – is not just a convenience for the patient, it’s a very real way to debug a health record. So instead of knocking Google Health or Microsoft HealthVault or Dossia or Indivo, the question to ask here is: what’s the quality of hospital medical records if patients are left out of the feedback loop? Sure the Google Health errors would likely have been far less egregious if the BIDMC hadn’t shipped billing codes, but that’s a distraction. The core issue remains: what is the feedback loop that ensures a patient’s health record is reliable?.

The Boston Globe, for all of its good reporting, misses the point and hints at overreaction by removing the feedback:

In the meantime, said Tang, who was recently appointed to a new committee advising the Obama administration on health technology, the risks to patients need to be studied further. “Probably for some patients it’s a net benefit, and for others it’s a risk,” he said.

The solution is not a continued paternalistic attitude that claims some patients are ill equipped to deal with this data. As the healthcare system gets more complicated, more specialized, and more fragmented, the most promising and feasible quality-control feedback loop is the patient. Sure, for a little while, the data that filters down to PCHRs will be problematic. But at least it will be checkable by the patient, and that’s quality control you simply won’t get from a hospital medical record divorced from patient oversight. Over time, personally controlled health records are likely going to become a far more reliable source of data than the hospital medical records themselves.

Finally, a feedback loop needs closure. One important technical challenge for personally controlled health records will be ensuring that patients can make corrections to their data in a way that filters back to the hospital’s record. And not just by being featured in the Boston Globe.






2 responses to “Personal health record: it’s about the feedback loop”

  1. e-Patient Dave Avatar

    Congratulations! This is one of the most perceptive assessments of the situation that I’ve seen! You’re absolutely right about the need for vetting.

    I posted an updated this morning with further findings on the errors we found in my record.

    It’s my fervent hope that data quality professionals will be all over this issue, making lots of noise about how (a) this MUST be solved, and (b) it CAN be solved, despite protestations of some healthcare folks who say it’s just too complicated.

    We know it can be done. It’ll take work, but as anyone who’s been through it knows, you just gotta get started and work it through.

  2. ben Avatar

    Thanks Dave, and thanks for your very thorough work on debugging this issue with John Halamka and the BIDMC.

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