About 5 years ago, I co-chaired the CCHIT Personal Health Records Workgroup, where I met a gentleman named Larry Williams, who is/was affiliated with the auto industry.
His work and passion raised many questions in our group, ranging from “what’s the auto industry doing in a dialogue about personal health records?” all the way to, “who is this man and why he is so passionate about all of this?”
Since I was co-chair I did the thing that co-chairs do. I called Larry up and
talked listened to him (or as they say in the medical biz “took a good history.”), and I learned a lot of things I didn’t know before.
Then something else happened within a few days of our conversation (a sign perhaps?) – I became an emergency responder myself. (see: Being an Emergency Responder in the era of Personal Health Records | Ted Eytan, MD )
And guess what, I experienced everything Larry told me that emergency responders experience – not knowing the identity of the person you are trying to help, feeling helpless for them, for their families, for myself, without any medical information that might allow me to provide care on the scene.
Then it happened once more (another sign perhaps?) – this time in a local grocery store. The identity of the person was known, but nothing of their health history was, and with no access to it at their worksite – they would also essentially be a Jane Doe during a life-threatening crisis as I, and their co-workers, looked on helplessly.
Now it’s 5 years, and the death of a 27 year old woman and her daughter later, that have catalyzed the introduction of legislation to help first responders heal. See: Senator Curren Price and Assemblyman Steve Fox Introduce Bill for ‘Next-Of-Kin’ Notification Following Serious Traffic Crashes – Assemblymember Steve Fox Representing the 36th California Assembly District.
Gilani Taylor, who the act is named after, was an aspiring musician/artist, who died in 2011 in a car crash and fire that also took the life of her 9 year old daughter (see: Nearly 1,000 mourn aspiring Oxnard artist who died after fiery crash » Ventura County Star ). One of her last actions as a wife and mother was to hand her cell phone to a crash witness who used it to notify her family (see video below).
Because first responders often don’t have data or don’t have access to data that’s in siloed telematics systems, next-of-kin are delayed in notification. The voluntary VIN ECON database proposed in the legislation allows for the voluntary linkage of car ownership to identification. (See: California VIN ECON Next-of-Kin Notification Bill Has Global Implications for Telematics)
You could imagine a world where such uses of personal health data could also be linked, voluntarily, to employment or other identification for use in emergencies, where it is used appropriately to render (or not render) life saving care. As an example, whenever I register for a conference, I am asked who should be contacted in an emergency. That’s all that would be available, if people knew how to access it.
Back to Larry. I use my blog as a tool sometimes to record how far ahead of my time I am in some of my ideas. Since I blogged about Larry’s passion in 2008, that pegs him at close to 5 years. I have the posts to prove it.
A true innovator (which means someone who’s interested in ideas AND execution) is a socializer, not a loner, and true to form, here’s what Larry asks of me/us:
…my hope is HIT professionals will follow your lead and join the AB 397 LinkedIn Group (also, on Facebook) and work ‘hand-in-hand’ with law enforcement to make this legislation a ‘win-win’ for everybody, and save some lives in the process 🙂
I believed him then and I believe him now, that there is a future where our health data can be accessible by us or people we designate when and where it’s needed most.
That’s what the auto industry is doing in a dialogue about personal health records, due in part to Larry’s work. Make sense? Health care, there’s a mentor around every corner :).
See Gilalni Taylor’s story below, from the day her daughter died.