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.

Another really interesting insight relates to the fact that a small group of patients account for much of health care costs in the U.S.:

Contextual barriers to clinical collaboration via ODLs:
These solutions are most relevant to the 5% of a given patient population that have multiple co-occurring conditions and tend to account for over 50% of the cost of annual care. (see Medicare and complex conditions)

Promising practice:
We have to design for the 95% without sacrificing the 5%’ers for whom this technology has the potential to be truly life saving. This is where I think a multi-tiered approach to ODLs makes sense: maintain a lightweight interaction limited to the bare minimum of ODLs with the least effort to record, while revealing more granular reporting of an expanded ODLs set as needed for those who can use them.

His insights go straight to one of the points I make all the time: Patients and the people who love them are not just your target audience, but your colleagues. They are a resource for innovation and knowledge.

Reading his entries also makes me think there is a new category of e-patient: the participant-entrepreneur. Not content to stand by and let other people innovate for them, these people are creating the services, devices, and communities they need.

Other people I’d put in the participant-entrepreneur category:  Jen McCabe of Contagion Health, Alexandra Carmichael of CureTogether, Amy Tenderich of the DiabetesMine Design Challenge, and Matthew Zachary of the i’m too young for this! cancer foundation.  Who else should be on this list? What advice do you have for them? What condition needs attention from a new participant-entrepreneur?