Glenna Crooks

By Glenna Crooks. Imagine my surprise last week when I learned – second hand – that I have Cystic Fibrosis. Most people hear that diagnosis after an extensive series of tests and their doctor is the one to deliver the news. In my case, I learned from an electronic record.

There’s a bit of a back story here. I decided earlier this year to develop an electronic personal health record, mostly for the sake of my own convenience and also to avoid problems created by faulty memory in the event of a serious injury or illness – especially during my travels around the world – and particularly because I am allergic to a medication.

A knowledgeable friend suggested I start with the EHR used by my insurer and so I did, only to abandon the project hours later. Perhaps it was my inability to figure out how to use the chosen format well or my impatience in not reaching out for technical assistance that day, but I found it lacking and quit, vowing I’d get around to finding another format some other day.

The menu of medication allergies did not contain mine, for example, nor did it allow for an ‘other’ category where I could record mine. Given it’s a serious allergy and reactions are potentially life-threatening, that limitation was disappointing but one I thought I might be able to manage in some other way.  Events like surgeries created the real barrier, however, as the items required more information than I could remember and would not allow for only partial data entry. For example, I remember the surgeries I’ve had, the year they occurred and in most cases, even the season of the year. I can’t remember, however, the specific date or name of the surgeon for most of them – which were decades ago. I could ‘guess’ at some dates and names but it seemed to defeat the purpose to say it was an accurate record but that some of the information was fabricated.

Though I abandoned the record, my insurer has not. Now that a skeleton record it there, the company populates it with information about tests and visits it reimburses, notifying me with a ‘push’ email each time it does. That’s actually a nice feature and I appreciate the service. I’d appreciate it even more if this was a record I could use.

I rarely check the information the insurer sends because my physician gives me copies of all my tests and their results but last week, in a rare ‘free’ moment, one of those emails arrived and I decided to see what was there.

That’s when I learned that my insurer had populated my record not only with new items but with historical information as well and in 1997 I had been diagnosed with Cystic Fibrosis. To be clear, I don’t have the disease, which is quite serious and though recently treatments have extended the lifespan of those who have it, those with Cystic Fibrosis don’t live the number of years or with the quality of life that I’ve enjoyed.

In the next several weeks, I’ll be working to try to correct that record. Like the monthly reports I get on credit status, I’ll be more vigilant to assure that if those records are used by others to make decisions about me, that they are correct.

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One Response to “The Perils of Personal Health Records”

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