Thursday, November 30, 2017

Another Dispatch from a Broken Healthcare System

I'm working on a series of "Dispatches from a Broken Healthcare System" based on my personal experience as a care navigator.   I've already written about a frustrating care management experience

Today's blog is a guest post from Amy Stiner, a healthcare expert and single mom from the Pacific Northwest.    She reflects below on what should be a simple task - transferring records between institutions in the age of Meaningful Use.

"My name is Amy Stiner and my healthcare consulting career has taken my 6-year old son, my mother, and me progressively across the country.  Over the course of Grant’s sweet little life, he has been a patient at 8 nationally recognized academic health systems.  In a sentence, my son has a severe form of ADHD with an extremely severe feeding disorder without a clear etiology.  He is progressively starving to death.

We have experienced healthcare delivery in a variety of health systems in cities that are inclusive of Boston, St Louis, Chicago, Honolulu, and Seattle. Even exotic, Eau Claire, Wisconsin.  After leaving Boston in 2011, things have gotten messy with medical records and transfers of care.
Based on my experience,  the two biggest contributors to the delays in transitions of care across America have been:
1) Medical Record Requesting
2) Transfer of Care Handoff/Provider Referrals/Conversations

By far, the biggest offender is the medical records requesting process. You may be wondering - how is it possible that requesting medical records is creating such massive delays in care? The answer is not straightforward, but rather a sequence of events that delay initial appointment scheduling.  This exercise has become a series of hoops to jump through,  ultimately obtaining that ‘prized appointment’ with a specialist or sub-specialist.  I am a mother and clinician who is constantly pursuing the ‘gastroenterology and feeding clinic appointment merit badge’.

The Mission Should I Choose to Accept It

Every time I attempt to get him established with a new health system, I am more often met with a brick wall of obstruction at the entry point for care rather than a welcome mat.  The initial appointment conversations (90% of the time) go something like this:

“Before your son can be scheduled—we need to have a copy of (1) the medical records and (2.) referral/phone call person to person conversation from your former physician.”

Hearing that sentence alone is enough to make my voice raise a whole octave.  They know and I know that ‘patient first care’ is never a part of that sentence.  I have been in this industry long enough to know why they have made it my problem to chase information because providers can’t seem to obtain it efficiently either.  If my child’s condition worsens or if he is running out the prescription formula that he needs the health system doesn’t suffer but my son, my mother, and I do. Delays in patient care hurt the whole family.

A Convoluted Process of…Processes

Once again, I am being given my marching orders by the new patient in-take person. Go find all the records.  Go chase your referring physician for a physician to physician phone call.  “Don’t call us, we’ll call you when we get around to it after we receive everything and only if we remember to look for them and don’t lose your records first.”  Its like a Monty Python sketch. It would be funny if it wasn’t true.

I hang up the phone, fighting back swear words and tears.  I know that I don’t have the time during a work day, while in a different time zone, to chase these things.  That the evening, when I should be reading a bed-time story to my son or trying to get him to take in a few more life sustaining calories, I will instead be downloading 8 different multi-page medical request forms to my PC. Then I’ll remember that I don’t think I have enough ink in the printer for all the pages.  One academic health system (with Nobel Prizes in Economics) has three (3) pages of instructions on how to fill out the two (2) page request form.  It then follows those instructions up with all the different postal addresses that the form will need to be copied and mailed too.  Yes.  Postal mailing the same form in different envelopes to different locations for the same health system.  Ironically, we are all not realizing economies of scale in this process.

Each form makes me carefully select all the locations of patient care within the health system, where my son has been seen. Why can’t they just aggregate it based on his account number or something and magically pull it all together?  They all make me choose if I want notes, records, images, mental health, reproductive health, and more.  I always anxiously look for the “ALL RECORDS TICK BOX”—EVERYTHING!!!  I WANT EVERYTHING!!!  There isn’t a magical everything box, so I resentfully tick mark each individual little box for everything.

I hurriedly complete this information on 8 different multi-page forms for each health system and the instructions sound like a lecture from a teacher in high-school “If the information provided is incomplete records will not be sent.”  I really hate this process and I suddenly realize I don’t have enough postage stamps to mail the ones that need to be mailed.  I now make an unplanned trip to the post office. I am angry, and the printer is beeping as I walk out the door to get stamps.

The Options Aren’t Impressive and Not User Friendly

Along with all the above  I am asked to select the media by which the health systems will send and receive the information.  Disc? Paper? Images? Some simply tell me what the doctor is going to get.  That’s it.  The doctor doesn’t get a choice—the doctor is going to get paper or a disc and hopefully that provider can just deal with the paper or disc that is being sent. I can’t use the disc, my PC doesn’t have a disc drive. I pray the physician has one.

Receive a paper copy of the information myself? I must pay for it.  Lord only knows how many pages there are? Some health systems charge per page.  Why aren’t these items in the portals or sent in an electronic format?  It is 2017 and surely healthcare technology should be adopted to handle this seemingly simple task?

The Mystery Treasure Hunt Ensues

I have never seen the full records from any of the facilities that have cared for my son and have no idea what is already existing in each one from a prior provider. I assume they are a mess.  Each move, I have requested medical records from every single place just to be on the safe side (to get everything).  In theory there should multiple copies in the record from each past health system.  Based on recent experience, I imagine they haven’t received much because I had to do this whole thing twice, and only after that duplicated process did we receive one single copy from one institution in Chicago. Although we didn’t know initially if anything had really been received.

After my insistence, a kind-hearted network of health system leaders formed a medical record search party.  They looked for anything sent from 8 institutions with my son’s name on it.  “OH, WAIT!  WE FOUND ONE OF THEM!” cried the search party. The HIM department didn’t know what to do with the information—because they had no existing record to put it in. It was set aside until a record was started. (See how that worked?) We are delighted for the recovery and it calls for a celebration. I bought a bottle of wine and my mother was ecstatic on all fronts.

The Result

One year later, my son finally had his appointments after the initial step of the process was begun, the result of delayed records and missed phone calls between physicians with never ending phone tag.  The outcome of those appointments now has us planning a return to the East Coast.  His weight loss is worse than last August 2016, and his level of care involves more complexity in delivery. The silver lining in all of this, is that I have an amazing son and I am 100% committed to this marathon in a race against time for him and others.  There are other parents/care givers who are running the marathon with less time left than we have.  What will days, weeks, and months of delayed care  have cost all of us because of dangerous medical record request and referral processes we have in place?  My little guy and I are eternal optimists.  We believe that those of us in healthcare can and will do better.  Immediately. "


addiemaeweiss said...

Sadly this is so common - even in a single city such as Boston. The time it takes to try and figure it out and manage records is so exhausting. I spent a day trying to get records consolidated to a point where I would ideally have a copy of my own medical records and finally gave up - pushing it to another day. In 2013 I had X-rays at Brigham thinking I'd be going the route of a hip replacement but was referred to Boston Children's Hospital at age 37 for a different type of surgery - PAO. Because I was older than 35 my surgery was done at Beth Isreal but my surgeon was from Boston Children's. Boston Children's has one network for medical records, Brigham and Women's has another which my PCP is part of and Beth Isreal has their own too.

When I tried to track down my surgical records and create an account to review notes on Beth Isreal's site, I couldn't do it because my doctor didn't pop up as a choice because he was with Children's not Beth Isreal. To this day, my PCP doesn't have any of my surgical notes and every time I go I have to remind her what I had surgery for. My surgery notes are not part of my own records with my file at Boston Children's even though my surgeon is with Boston Children's. I understand HIPPA is to protect Patient Privacy but somehow we have made things so convoluted that patients can't even get their own information.

Jessica Sweeney-Platt said...

This just makes my heart hurt. Kudos to this amazing parent, and we have to do better for her, her son, and every other patient who may not have the tools that she so obviously does to navigate this crazy/complex ecosystem that we all work so hard to improve. Whenever I hear stories like this, I think about the patient who may not speak English as a first language, or who may have cognitive challenges. If it's this hard for those of us fortunate enough to NOT have those challenges, it's hard to fathom how the introduction of additional barriers might affect outcomes and life expectancies. Thank you for sharing this story.

Mike said...

Getting relevant, accurate, and thorough information to the right person at the right time is perhaps the most fragile link in the life-and-death critical chain of events.

I learned to carry a fat folder to every visit. I get a copy of the encounter before I leave. I have every DVD or film. Before visiting the next doctor, I tab the most relevant documents.

Europeans carry an ID card with their medical record on a chip.

At my local VA clinic, they receive tens of thousands of pages of medical records in the mail daily. A low-level clerk with very little training then has the mind-numbing tedious task of reviewing each page, assigning it to a category, deciding what to name it, and scanning it into the system as a photograph-like image. As a result, a provider looking for information must scroll through hundreds of pages, hoping to see something relevant. Needle in a haystack. Sometimes--literally--the stack falls over. It can take weeks to put something in the record. The paper copy is shredded.

This is one reason why, when we see a doctor to evaluate what might be a life-altering disabling illness in the making, a doctor might spend most of the appointment looking at the computer instead of the patient.