Yesterday I learned via twitter of the tragic and may I say ‘pre-mature‘ death of a patient advocate, HealthCamp friend and fellow soldier in the ‘making a difference‘ via health information technology and social platforms in particular movement.
If you missed the Tweetchat last night like me, you can follow #UnicornJess hashtag for tweets honoring Jess.
Much has and no doubt will be written about this abbreviated yet impactful life of a woman who some refer to as the poster child for the ‘funny, you don’t look sick‘ stereotype fueling in part the ‘not my problem‘ inherent in the code-speak and culture of medicine, as noted by our colleague Ted Eytan, MD:
“Realizing that it was likely that my engagement was going to do more harm than good, I limited my engagement. So did many of the doctors that she interacted with. The difference is that those doctors were her doctors, paid to work on her behalf. Their training must have been the same as mine because I could tell the acronym “not my problem” was underlying a lot of the behavior.”
A touching review of Jess’s plight and defacto indictment of our predominantly silo-ed sick care system is offered by Ted Eytan, MD ‘Remembering Jess Jacobs‘, Neil Versel ‘Jess Jacobs, upbeat empowered patient and Aetna innovator, dies‘, ‘The First to Fall‘ by Regina Holliday and ‘For Jess Jacobs: Friend, Fierce Patient Advocate, and Mythical Unicorn‘ by Mandi Bishop.
In searching through some of the interview footage, I came across this session with Jess at the XX in Health 2013 gathering in D.C. This is raw Jess…
I have so many issues with the loss of this talented, thoughtful and disciplined healthcare insider and ‘idiopathic‘ sufferer (i.e., ‘Unicorn‘ – as in the convergence of two concurrent rare diseases) who the system clearly failed (checkout the poignant discussion of the ‘not my problem‘ phenomenon deeply embedded in medical culture). So lets not be a witnessing party to Jess’s suffering and loss falling into the noise of an ADD fueled 24/7/365 faux news cycle.
For more of Jess’ many insights click here, and for just one in a series of compelling posts, read” ‘On Wasting My Time – The Numbers‘ (note the ‘value quotient‘ construct). This should be mandatory reading in ALL MPH, MBA or MHS graduate tracks. A fellow Cal Alum, UC Berkeley should be proud of Jess’s short tenure and no doubt high impact.