Health care’s not really about personalization… yet

My father was diagnosed with a metastatic melanoma tumor in his brain in the summer of 2016. This was four years after my younger sister, only 38 years young, died of a rare and painful form of cancer (PNET) four years ago.

In May, he had started having difficulty forming sentences. Then he tried sending an email that was completely illegible and when my mother tried reading it to me — verbatim — all I could say was “get Papa to the hospital now”. A day later, with a life-altering diagnosis, he was in the E.R. and we were preparing him to leave that hospital, and get him treatment at Stanford. One “open” craniotomy later, plus a session in a huge radio-stereotactic instrument (seen above, right) called the “cyber knife”, he is a miracle-baby. Every 90 days there is a guillotine hanging over his head, when tests have to either confirm or deny the presence of cancer, but almost 12 months later, he is healthy as a horse. (When I ask him to slow down a bit, he says, “Why don’t you ask your Google friends who come up to Tahoe for my private ski lessons if they were tired after one of my classes? They need more rest than I do.”) Hmph. Okay then.

THERE ARE PARTS OF OURSELVES THAT THE CONVENTIONAL HEALTH CARE SYSTEM ISN’T EQUIPPED TO HEAL OR NOURISH, ADDING TO OUR SUFFERING — DR. BJ MILLER

In the fall of 2016, I was diagnosed with a form of early stage breast cancer. It’s called DCIS. What I learned about the health care system as a caregiver — and it’s so-called level of personalization for patients — was about to shift considerably when I was the patient.

There are too many examples in the patient journey that are fit for disruption; from what we undergo in preventative testing to diagnosis to doctor appointments, labs, diagnostics, -omics and workups, health care insurance forms and appeals,the pain of treatments and mistreatments, or the severe lack of psycho-social support systems that deliver quality care AND support clinicians in their delivery of care that result from all that mess. This post isn’t about all of those.

I’m going to use this stream of consciousness post as a means to simply show my anger (and therefore, opportunity) for just how much inefficiency and pain there is in our healthcare system, how it feels as a patient, and how it’s feeding a new project called CURA.

The Good Intentions:

Mills Peninsula Hospital system wants to both inform and ready their doctors for patients’ clinical needs prior to medical procedures, and personalize the psycho-social needs of each patient prior to said medical procedure.

The execution of said intentions:

Patient goes through detailed diagnosis and testing prior to medical procedure with general practitioner and blood workup.

A few days later, a nurse plays phone tag for 2 days with patient to just schedule another call with another nurse, for a 45 min “maximum” call, to answer the same questions answered by all diagnostics and interview questions done with G.P.

Patient asks reason for the interview call with the nurse, after confirming that nurse sees all transcription of G.P. consult and diagnostics in the EHR, and is told anesthesiologist would like to know.

Patient inquires again about need for a 45 minute call to discuss everything that is documented exactly as seen in the EHR, and for which the anesthesiologist has access.

[Nurse pauses. Says she is looking at screen] Nurse says call would be only about 45 minutes and be very short. And that, because of the patient’s thoroughness with the G.P. that more likely the nurse interview will be to receive answers to questions like “Is there anything the staff can do to accommodate your stay at the hospital?”, “Are there any practices, spiritual or faith-based, that I would appreciate being able to do while in the hospital?”, and so on.

Patient asks for the online portal where they might answer the questions, acknowledging and thanking the nurse for their care and personalization of her needs.

Nurse answers no. That patients, in fact, have opted for phone calls (“99% of the time”) over mail.

Patient thinks “no shit”.

If you can’t see the bloat in this process, the clinical inefficiency, the waste of human resources ($ and time), and the lack of care for the “customer” (the patient) and their time, or their energy (patients are usually running on less than 1/2 tank) for such administrative adventures, it could be because I just didn’t use enough bold or italics to call it such pains.

What if we made patient satisfaction as important for health care, as Jeff Bezos makes customer satisfaction for Amazon?