A Missing and Ignored Patient Narrative

Posted on February 24, 2017 I Written By

Janae builds inbound social media sales and marketing plans for healthcare IT companies. Healthcare as a human right. Physician Suicide Loss Survivor. twitter: @coherencemed

Sometimes I feel like the discussion of the patient narrative and open notes make me want to scream.  Step away from the new Health trend and back to improving access for every patient. Patient Experience and specifically Patient Narrative has been a theme of the HIMSS healthcare conference this year, from patient data and records to open notes and patient advocates. I have to admit- I love watching what people have done and what companies think of.

It reminds me of my German class on the Literature of the Holocaust. Our professor stood up and introduced the Holocaust as unique because the German Jews could read and write, so they had records. Without records, the voices of countless have been lost. Their voices died with them. Patient Narrative is similar. It’s teaching us so much about better workflow and records and getting better outcomes. Max Stroud gave a great presentation about her sister’s experience with lung cancer and managing patient records. They both admitted that it was difficult for them despite being well educated and knowledgeable about healthcare.

At HIMSS everyone looks at shiny new products with novelty pens and some alternate universe where it makes sense that we all need another plug in to our electronic medical record to really “make a difference” for patient health.

Right before HIMSS some of my late husband’s medical school classmates came to visit me and go to ongoing education in Park City. I asked them what they thought about patient involvement and one of them discussed the reality of emergency room care in impoverished areas.  They discussed losing faith in patients and how to deal with trauma patients. I remember the jokes about drug seekers. I told them about being at dinner in suburban Utah when an acquaintance casually mentioned we should do Molly on our way to yoga. The doctors I told laughed it off and said Molly really wasn’t that serious. Those narratives aren’t on our health records and the healthcare system is hemorrhaging cost with its lack of ability to treat them. Patients in some rural areas have access to care issues that telehealth doesn’t always bridge the gap for.

Is patient narrative just the next buzzword so we can distract ourselves from poverty and violence and human trafficking and corporate identity theft? Are we just talking louder to drown out the patients that healthcare is failing? Not every company or hospital group can afford to go to HIMSS. Participants have relatively good access to care and a lifestyle of relative privilege. Exhibitors are selling something and it certainly isn’t about the unglamorous parts of medicine.  The undocumented patient narrative will never climb the walls of privilege in a system with an entire industry of payor complexity and government regulation.  There were so many companies and even in telemedicine in rural areas and patient narrative presentations I didn’t see the patient stories like the ones I heard from my friends.

We are distracting ourselves from the complete lack of availability of care for economically disadvantaged patients by geeking out over the shiny data with our fellow zealots.  We can learn new things and find interesting new companies and many places are getting better, but we need a new record and involvement from a group that could never come to HIMSS. A narrative for the illiterate, uninformed, impoverished forgotten stories.