Participant-Entrepreneurs: Innovating Toward Better Health

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?


Posted in: e-patient stories | key people





16 Responses to “Participant-Entrepreneurs: Innovating Toward Better Health”

  1. SusannahFox says:

    New post: Nikolai Kirienko of Crohnology.MD is a new kind of patient: a Participant-Entrepreneur

  2. RT@SusannahFox New post: Nikolai Kirienko of Crohnology.MD is a new kind of patient: a Participant-Entrepreneur

  3. Steve Downs says:

    RT @SusannahFox: New post: Nikolai Kirienko of Crohnology.MD is a new kind of patient: a Participant-Entrepreneur

  4. The comments regarding the tools used for observations of daily living are telling in that they indicate a lack of iterative design in the process of creating such applications. While those with chronic illness can be entrepreneurs, the other option is that those creating the applications collect feedback and usage information from users to improve the design of such products.

    • Susannah Fox says:

      Dig deeper into the Project HealthDesign site and I think you’ll find that it’s a more sophisticated project than you may have picked up from the blog entries. Iterative design is one of their mantras, I think.

    • Steve Downs says:

      I totally agree with you about iterative design. As Nikolai points out, there’s data in the absence of data and observing the usage patterns of these tools is an excellent way to get the feedback to improve them. As Susannah suggests, we have made user-centered design a hallmark of Project HealthDesign and each team will be using user groups to develop their prototypes and then test them with larger groups of patients. This is still relatively early work — the point of it is to learn so others than build on that early experience.

      I also want to point out that we’ve encouraged the teams to think out loud through the Project HealthDesign blog to get the kind of feedback you’ve offered and to share their insights as they have them. So thanks for the comment, please continue to follow the program and keep participating!

  5. SusannahFox says:

    @jensmccabe @diabetesmine @acarmichael @studidcancer I called you all a name (in a good way):

  6. RT @jensmccabe: Awesome article! Well deserved. Kolya's kicking "a" and taking "n"-+ @diabetesmine @acarmichael (via @SusannahFox)

  7. KentBottles says:

    RT @pioneerrwjf
    RT @PaulTarini: RT @SusannahFox: N. Kirienko of Crohnology.MD new patient: a Participant-Entrepreneur

  8. Awesome article! Well deserved. Kolya's kicking "a" and taking "n"-+ @diabetesmine @acarmichael (via @SusannahFox)

  9. RT @pioneerrwjf: RT @SusannahFox: Nikolai Kirienko of Crohnology.MD=new kind of patient: a Participant-Entrepreneur

  10. SusannahFox says:

    @PaulTarini @stephenjdowns @pioneerrwjf Thanks for the RT! Care to answer first Q in the comments?

  11. DiabetesMine says:

    Wow! I'm proud to be in new category of #epatients –> participant-entrepreneurs Thx to @SusannahFox #health20

  12. RT @DiabetesMine I'm proud to be in new category of #epatients –> participant-entrepreneurs Thx @SusannahFox #health20

  13. Susannah Fox says:

    Patti Brennan, Director of Project HealthDesign, wrote an excellent commentary on the recent New York Times magazine cover story about the Quantified Self movement and its promise for chronic disease management:

    We’re Not All Geeks: Harnessing Data for Health

    And if you haven’t read Gary Wolf’s article, that’s a must-read too:

    The Data-Driven Life

  14. […] and principal author of the Project’s survey reports on health. Read more about Susannah Fox here and more of her articles can be found […]

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