On a bitter cold December day in 1982, I fired up my sedan and drove my fifty-three-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 (loss of consciousness, syncope in the medical lexicon) the cause of which had eluded 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 seemed just natural.

No, it’s not a technical issue. It’s 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 and negative effect on our ability to deliver effective health care.
What else seemed natural was the grocery bag full of documents. Health documents chronicling all of the tests done heretofore on my father, including radiological X-rays photographs (do not bend).

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 HIPAA was supposed to answer that question and solve that problem.

Unfortunately, the cause of my father’s illness eluded the clinic, as it had every other provider. My father died three months later and it wasn’t until his autopsy that we finally knew what had killed him: a massive aortic dissection made worse by the blood thinners that had been prescribed (not by Cleveland) as a prophylactic against blood clotting.

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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 of all Saudi Arabia’s royalty. A few months before our visit, the clinic hosted Saudi Crown Prince Nayef -- for what were deemed just routine tests. Medical tourism comes a little easier when you’ve got your own 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 four days after our visit to Cleveland. Like my father, the only definitive diagnosis of her illness was post-mortem: Cardiac Amyloidosis. Possibly made worse by the cardiac medicine she’d been prescribed (again, not by Cleveland).

Thirty-years after my trip with my father, and fifteen years since the passage of HIPAA, nothing had really changed. Patients, not providers. Patients, not payers. Patients, not the institutions were still responsible for shuffling their own health care data between one provider and another.

That is when they could even get at what was, by the HIPAA act, their own property.

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My minor stepson recently broke his leg (badly). Now, nearly three months since that break, my wife is struggling to get the involved Oregon hospitals and clinics to release his 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 patient’s 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.

Today we treat patient health record portability as a technical issue, something that we haven’t been able to realize only 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. And, while important, 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. Solutions that are far more implementable than the byzantine arrangement of health information exchanges, DIRECT protocols, virtual private networks, etc. that our industry insist are the only way.

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No, it’s not a technical issue. It’s 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 and negative effect 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 no matter where he presents or what records he brings with him.

My father and late wife, however, did not present with acute conditions. Theirs 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.

Would the more holistic view of their respective conditions have led to a 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 provider themselves had drawn – for a Eureka! moment?

I think so. Perhaps not in their cases, but certainly in others. Millions of patients go through the same experiences they had. Millions of patients are responsible for carting their own records from provider to provider, only to have the records ignored in favor of generating new ones, instead.

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

It’s a moral issue. It’s not technical and we need to stop using imagined technical barriers as an excuse to not address it.