By Nikolai Kirienko, University of California, Berkeley, Crohnology.MD Project Director
For an unvarnished peak behind the curtain, the following is an account of how my approach to ODLs has dramatically evolved over the last three weeks in the midst of an unfolding health crisis.
The situation becomes isolating quickly; the acute aspects of the experience are unpleasant, embarrassing, socially burdensome and I hardly wanted to acknowledge them to myself or anyone else. I just wanted to hideout until it all blew over. Because it does pass, eventually. But, the cost in the meantime is often far too steep. So how can we address this difficult situation with ODL's?
Ability barriers to clinical collaboration via ODLs:
On days where I could have benefited from the feedback of ODLs 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. Secondly, I didn't want to dwell on this negative experience for even a second longer than I had to.
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.
A reporting approach vaguely similar to 'Plerts' comes to mind: notifying a caregiver or provider when the last reported ODLs were trending into negative territory for consecutive days and/or weeks, only to disappear altogether. Skip out on your ODLs, and expect a call. Or better yet, a knock at the door. Yet, this implies a social contract-like, community based approach to reporting ODLs; which means actually taking ODLs seriously as a team sport, and deliberately assigning roles. No more hiding.
Motivation barriers to clinical collaboration via ODLs:
Never underestimate the power of denial, especially in a complex condition.
Whenever possible, subjective ODLs need an objective counterweight. For example, when treating anemia, display hemoglobin alongside subjective reports of fatigue. When treating depression, display exercise (step count from a pedometer) along side subjective reports of mood. When sampling pain, (at least in Crohn's) it makes sense to view it along side weight (say, from a bluetooth weight scale) because when eating is painful, the easiest response is to simply eat less, or nothing at all. Balancing subjective ODLs with 'device enabled' objective ODLs is likely to provide a more clinically relevant picture than either sampling method alone.
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)
This is a raw look at my 'n' of one experience with ODLs, but I hope it's honesty and candor is valuable to others designing for chronic illness. At the core, ODLs are about getting at the truth, especially when it hurts- while reminding those who are suffering that they are not alone. In the not too distant future, help may be an ODL away.
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.