Growing up in a small village in upstate New York, I have fond memories of a family doctor who actually … wait for it … made house calls!  Yes, on those rare occasions when Mom’s home remedies were insufficient, Doc Shafmeister would show up at the door with his black bag and caring manner.  I don’t know how he got paid … scant resources and a lack of insurance defined our household … but, as I recall, his ministrations always helped me to get well.  

Fast forward to today’s environment of deeply-intertwined health care, insurance, the internet and big business, a world into which we were recently thrust via an ambulance ride to the Emergency Room and a subsequent hospital admission.  Gratefully, the quality of medical care received at the hospital, itself, and from the various doctors, specialists and staff we encountered was of superior quality.  Their work was impeccable and caring, and we are forever grateful for their skills and dedication.  

That said, arranging for continued care after discharge from the hospital was, well, a nightmare.  In our defense, we are fairly computer-literate, but the morass of web sites, “patient portals,” calendars, phone numbers, email addresses and assorted other “apps” to which we were obliged to respond left us feeling overwhelmed.  For example:

⚫️Each of four doctor’s offices, a lab, an imaging center and the hospital itself presented us with a bevy of electronic forms to complete, and …

⚫️Each of those forms asked basically … and at great length … for the same information, and …

⚫️If we had a question for a doctor, we could submit it through a “portal” promising a reply in up to 72 hours, and …

⚫️When one doctor prescribed a new drug, checking for possible contraindications with a different doctor could take, again, up to 72 hours, and …

⚫️We could forget about trying to actually speak to someone by phone.  Office staff, understandably, cannot provide medical information … the best they could do was promise to forward a message to medical staff.

Adding another layer of aggravation in the midst of this confusion, a suspicious email showed up in our inbox inviting us to “click here” to register with some other medical entity.  Though at first glance seeming legitimate, it was a Phishing attempt and we simply deleted it.  But give credit to the scoundrel who sent it … he could not have picked a better target than someone thoroughly fatigued and fed up with all forms of electronic media. In other words … me.

As mentioned above, we could not have been more pleased with the various medical professionals whose efforts contributed so fully to diagnosing and treating the condition that presented itself.  And while we know how lucky we are to have access to such high quality care, the bureaucracy and repetitive, overly-complicated requests for information woven through the process are exhausting.  In short, one is left to wonder …  don’t these entities talk to each other?  Isn’t there some master data base that each can access?  Is there not some mechanism for conversing with a human being about medical concerns?  Weren’t computerization and associated data technology supposed to make things easer for us? 

Despite how this may read we endeavored, throughout, to avoid becoming known around various medical offices as nuisances … you know, “that patient” who nobody wants to talk to.  On the other hand, we saw our part in this endeavor as being vigorous advocates for patient care, and we took that role seriously.

The days of Doctor Shafmeister’s form of family care are long gone.  In its stead we find ourselves, today, in an environment in dire need of an ombudsman or “voice” for patients who find themselves adrift in the digital world of medicine.  Put differently, the system needs someone equipped to help us … especially the elderly … better understand what is going on with our medical care, while managing and explaining the process in ways we can comprehend.  

Jason Wolf is President and CEO of the Beryl Institute, an  institution dedicated to supporting patient and human experience in healthcare.  He describes the focus of his organization this way:

To truly improve the patient experience, we must understand the patient journey from the patient’s perspective.

Well said, Dr. Wolf.  Well said.