Susannah Fox’s post about this two years ago pretty much went over my head: I didn’t get how important it was. But at this month’s White House conference on patient-generated data, I met Nikolai Kirienko, who was the central specimen in her post. The start:
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Nikolai Kirienko, Crohnology.MD Project Director, is setting a new standard for transparency in research and innovation as he blogs about his work with Project HealthDesign:

On days where I could have benefited from the feedback of [Observations of Daily Living] the most, I was the least likely to be recording them. Why? On the worst days, I was literally too nauseated to answer my phone when it rang, let alone futz with one of the three Crohn’s symptom tracking apps on my iPhone – none of which even acknowledged my nausea and related gems as symptoms.

But even as his personal health deteriorates (and hopefully improves!) Kirienko is recording the lessons he’s learning about health care social media:

Promising practice: 
We need to rethink our ODLs reporting methods. The obvious solution: include the ability for caregivers/very special friends to report ODLs. However, I live alone for weeks at a time. The less obvious solution: make it impossible not to report. As in, no status is in fact, a status.

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“No status is in fact a status.” How smart is that?? And it’s hard to “get it” if you haven’t been inside the crisis, as Nikolai has been.

“Kolya” (his nickname) is a remarkable engaged patient. Among other claims to fame, on one occasion he revoked his consent, on the operating table. Why? Because he sensed the early signs of a familiar problem – a clot – which could have killed him. The clinicians in the OR did not agree, but he insisted, and it may have saved his life: an ultrasound found the clot.

This feeds right into the validity of patient-reported everything, which is the focus of last night’s post: the government is asking for input on whether patient-reported data should be required to be accepted in the medical record.

The policy lesson: real value can be generated by people who are right there in the crucible and can see what’s needed. 

Corollary: it’s an error to disregard patient perspectives. Many doctors have experienced this first-hand when they become patients and find themselves ignored. (Consider the example of Itzhak Brook MD, an important senior physician, who wrote in our JoPM last year about his experience as a patient.)

As I say, that post was two years ago. See also the list of some other “participant-entrepreneurs” Susannah wrote about back then.