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A Doctor Seeks An Electronic Record For Her Health

Over the weekend I developed another bout of diverticulitis. Did the usual: fluids, antibiotics, rest, avoided going to the ER, cancelled travel plans.

One of my doctors asked a very simple question: is this happening more frequently? The answer, we both knew, was yes. But I don’t have a Personal Health Record (PHR) that in principle, through a few clicks, would give a time-frame graph of the bouts and severity of the episodes over the past several years.

The last time this happened, and the time before that, I thought I’d finally start a PHR. Like most compulsive patients, I keep records about my health. In the folder in my closet in a cheap old-fashioned filing box, the kind with a handled top that flips open, I’ve got an EKG from 15 years ago, an OR report from my spine surgery, copies of lab results that the ordering physicians chose to send me, path reports from my breasts, a skin lesion or two, and, more recently a colonic polyp, bone density studies from 2004, EMGs and more, essentially miscellaneous results.

None of the records I have are digital.

A few years back I considered using Google Health. But their service, as I understood it, involved scanning documents and uploading them to the Cloud, or paying someone else to do so. That sounded like a hassle. But even had I done that, I wouldn’t have been able to, say, see a graph of my hemoglobin since 1986, or something as simple as my weight changes over time. When Google Health folded a few months back, I was disappointed. At the same time, I breathed a sigh of relief that I hadn’t invested my personal and limited energies into putting my records there.

But now what?

I searched for a PHR, again on-line, and found some commercial stuff, mainly targeting doctors’ offices and larger health care systems. Medicare’s information on Managing Your Health Information Online offers bullet-point explanations on Why Use PHRs?

But I needed no convincing. What I need is software, or a platform, that’s user-friendly and secure. Ideally mine would mesh with my physicians’ records, but my doctors use a variety of record systems. So it’s up to me to integrate the data, if anyone will. The problem is there’s little out there, as best I can tell, that’s intended for patients. Most IT companies are, for now, focused on getting doctors to sign on.

So I’ll start an Excel spreadsheet, today, on my PC. There must be a better way.

*This blog post was originally published at Medical Lessons*


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One Response to “A Doctor Seeks An Electronic Record For Her Health”

  1. Ben says:

    I’ve worked in the EHR/EMR field as a developer, and I’m afraid that the day when EMR data will easily sync with PMH systems is still quite far off. The big problems are around questions of standardization. There are specialized xml schemas (CCR, etc) that are designed for moving information from system to system, but – in order to get buy-in from the largest possible number of other medical systems – these schemas tend to allow a great deal of flexibility in how the data is coded. This is great when you’re trying to export data, because you can format it however you like, but it makes importing data accurately extremely difficult: there are multiple schema’s for procedure codes (ICD9CM, CPT), for drugs (VA,FDA, and several proprietary systems), diagnostics (ICD9,ICD10… though this is probably the most standardized part of medical records). So any system that was importing this data would have to make sure it could “understand” a huge array of coding systems… but even here you haven’t gotten to the worst part of the schema, which is the allowance of “free-text” as a valid field of entry. Having now run imports from several different EMR systems, it’s amazing how many of them simply include every rx, dx, and order as free-text. They do this because it is easy to program, and they have no incentive to create truly interchangeable documents (quite the opposite, actually, as portability increases the ability of users to leave). This means that no other system can “understand” the data… it can be listed as text, but no drug-drug interaction check can be run, the results of tests cannot be compiled or compared, etc etc. All of this makes the logistics of simply importing the records from your doc very difficult.

    These challenges aren’t entirely insurmountable, but as of yet it’s not clear that the demand from patients is high enough for doctors and EHR vendors to take this sort of interoperability into account. There have been several commercial PMH systems built, but very few patients seem willing to pay for the service… even Google Health, which was free and reasonably easy to use, ultimately folded due to “lack of interest”.

    I agree that this is potentially a useful tool, but without strong demand from patients (and a willingness on the part of doctors or patients to pay for this service), it will be a while before a company starts offering cheap or free PMH systems that are capable of overcoming the considerable technological hurtles of importing a wide range of medical data… and longer still before doctors start making this data readily available to patients (remember, if a doctor releases records to you it takes labor on their part and exposes them to major liability under HIPAA… and they’re not reimbursed for this work and risk).

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