Medical record portability is a moral issue, not a technical one

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On a bitter cold December day in 1982, I fired up my sedan and drove my 53-year-old father from his home in Bloomington, Indiana, to Cleveland, Ohio.

Our destination was the Cleveland Clinic, then basking in the glory of having recently performed coronary bypass surgery on King Khalid Ibn Abdul Aziz of Saudi Arabia.

My father had had a series of fainting spells (loss of consciousness, syncope in the medical lexicon), the cause of which had eluded healthcare providers from Bloomington to Indianapolis.

The Cleveland Clinic seemed the next logical step up in search of what was going on.

Cleveland was also my father’s home town, so it all just seemed natural.

Carrying the Records in 1982

What else seemed natural was the grocery bag full of documents. Health documents that chronicled all of the tests that had been performed on my father, including radiographs (Do not bend.), and the variety of professional opinions on the results.

This was, of course, well before the issue of medical record portability, much less who owned the records, was on anyone’s technical radar screen.

This was well before the Health Insurance Portability and Accountability Act (HIPAA; passed by congress in 1996) was supposed to answer that question and solve that problem.

Unfortunately, the cause of my father’s illness eluded the physicians at Cleveland Clinic, as it had every other provider. My father died 3 months later and it wasn’t until his autopsy that we finally knew what had killed him. He had suffered a massive aortic dissection which had likely been aggravated by the anticoagulants prescribed erroneously (not by Cleveland Clinic physicians) to treat a non-existent blood clot.

Carrying the Records in 2012

On a beautiful fall day in 2012, I fired up my minivan and drove my late wife from our home in Bloomington, Indiana, to Cleveland, Ohio.

Our destination was again the Cleveland Clinic — now also the first-stop destination for all of Saudi Arabia’s royalty, and widely considered to be the best heart center in the world. A few months before our visit, the Clinic had hosted Saudi Crown Prince Nayef — for what were deemed to be routine tests.

Medical tourism comes a little easier when you own a 747.

The parallels were eerie, including the fact that we’d found it necessary to fill another grocery bag full of documents. Most them paper with some smattering of digital: imaging data stored on CD-ROM (no structured data, such as a C-CDA record; Again, do not bend).

The parallels also included the fact that no definitive diagnosis of my late wife’s illness could be made and she died just 4 days after our visit to Cleveland. Like my father, the only definitive diagnosis of her illness was postmortem: cardiac amyloidosis. Possibly made worse by the cardiac medicine she’d been prescribed (again, not by Cleveland Clinic physicians).

2016: Do Not Bend

Thirty-years after my trip with my father, and fifteen years since the passage of HIPAA, not much has really changed. Patients, not providers; patients, not payers; patients, not the institutions are still responsible for shuffling healthcare data among providers and institutions. That is when patients can access those data, which, by the HIPAA act, is their own property.

My minor stepson recently broke his leg (badly). Now, nearly 3 months since the fracture, my wife is struggling to get the involved Oregon hospitals and clinics to release her son’s medical records to her. Why? Because she needs to cart that data to his follow-up providers.

She needs to fill her grocery-bag.

But she can’t even get what she needs to fill that bag. Providers drag their feet providing patients with the patients’ own data. There’s no billing code for that. There’s no profit in enhancing record portability. Money is made in inaction, not action.

Things are getting worse, not better.

A Moral Issue, Not a Technical One

Today we treat patient health record portability as a technical issue, something that we haven’t been able to achieve because of insufficient technology.

Organizations like Internet2 are working on federated patient identity, global MRNs if you will. HL7, the federal government, and others are working on data formats and interchange formats.

But the problems with patient portability aren’t technical. We have enough formats.

We don’t need to resolve the patient identity issue before we can effectively, electronically, exchange patient records. In fact, there are off-the-shelf solutions to the issues of record protection and privacy that the rest of the world has been using successfully for decades. These solutions are far more easily implemented than the byzantine arrangement of health information exchanges, DIRECT protocols, virtual private networks, and the like, that our industry insists are the only way.

No, it’s not a technical issue. It is a moral issue. It’s a moral issue because, beyond my own anecdotal evidence here, there is empirical evidence that barriers to record portability have a direct negative influence on our ability to deliver effective health care.

This is particularly true when it comes to chronic conditions and diseases. My stepson’s broken leg is serious, but it’s also acute. There is no mystery about what ails him and subsequently no lack of diagnosis — irrespective of where he presents or what records he brings with him.

My father and late wife, however, did not present with acute conditions. Their conditions were chronic and our medicine does a very poor job diagnosing, much less managing, chronic conditions.

Every clinic and every hospital that either of them visited generated its own set of records — while ignoring any set of records created by another entity. They didn’t ignore those records because of their own incompetence. They ignored them because they were either unavailable or available in a form that was unusable (i.e. unstructured).

It was simply easier for everyone to run their own tests, rather than refer to results obtained earlier. Duplication and redundancy were, and are, the norm.

Eureka!

Would the more holistic view of these patients’ respective conditions have precipitated an accurate diagnosis? If their health information hadn’t been so balkanized, would a provider have been able to connect all of the dots — not just the dots that the providers themselves had drawn. Would it have led to a Eureka! moment?

We will never know, but I think so. Perhaps not in these cases, but certainly in others. Millions of patients go through the same experiences as my father and wife. Millions of patients are responsible for carting records from provider to provider, only to have the records ignored in favor of generating new ones.

As a result, millions of patients are being under served. Some are getting sicker because of this. Some are dying because of this.

It’s a moral issue. It’s not technical one. We need to stop using imagined technical barriers as an excuse to ignore it.