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Personal Health Record, Vital to Personalized Medicine

Posted Mar 30 2009 3:39pm
I am a huge proponent of Personal Health Records. What is a PHR? Let me first tell you what a PHR is not.

A PHR is Not

1. An electronic medical record

2. An always secure way to store your health information

3. Always compatible with other software.

I admitted a woman the other day to the hospital. She wasn't a patient of ours at Helix Health, instead she was a patient of a group who we were covering. In the ED she handed me 7 pages of (typed in Times New Roman as a Word .doc), her Health Records. It didn't have lab values nor did it have all the exact results of the studies which she had. Instead this was HER record of everything that had happened to HER medically. It was written through HER interpretation, misspellings and all.

I wondered how long it took her to compile this information. I imagine it must have been at least a few days work, if not more. It was fairly accurate, but failed to precisely capture the data that I as a doctor was looking for.

This was her own creation.
There exist many of these companies on the internet today. You can order your PHR through a company or through Google. Although, with the security problems that Google has been having lately, I imagine perhaps a recordstored on your USBmay be superior......Maybe.....I am not certian about that.

I began to wonder, has anyone done any academic study on which way is the best to have your records? Just then, the weekly copy of the New England Journal of Medicine pops up in my mailbox.

In it wasan editorialentitled-

"YourDoctor's Officeor theInternet? Two Paths to Personal Health Records"

In the article, they talk about several topics which are salient and ask very important questions, which I hope someone will answer. They talk about a patient named Mary, a patient who is on multiple medications for her 4 chronic conditions.

1. As the baby boomers age and develop chronic diseases, the gap between patients' desire for information and physicians' ability to provide it is likely to increase. How will this gap be filled?

2. What if Mary could view her test results within hours after her blood was drawn? What would she do with the results*?(*is my question)

3. Unlike the stand-alone models, integrated PHRs are essentially portals into the EHRs of patients' health care providers. Is that important*? (*is my question)

4. Microsoft says it will seek patients' consent before sharing data with third parties, but none of these application suppliers are covered by HIPAA.Is that important*?(*is my question)what about CCHIT??

Here is my take. Well, before that let me clarify my stance on tech and health. Many feel that I am a detractor towards patient empowerment in this space simply because of my railing against DTC genomic companies.

This is simply untrue. I am a big supporter of PHRs and EMRs and patient controlled data. In fact I have advised several PHR companies on this and have even worked with an EMR company to find a way to amend its PHR applications.

This space IS the key to personalized medicine. Why? Well, for one, you are giving patients clinically meaningful data AND a plan to act on it. You are sharing responsibility for data gathering of information which has been PROVEN to be clinically useful.

You are not confusing your patients with stuff that likely won't matter in the end. Nor will it have close to the meaning of a good family history. Which is why Ancestry companies would be really smart to start working in this space.

The Sherpa Says: In the end, everyone will have a PHR. And in the end everyone will have a genome scan. Which will come first may well be a result of needing the other. Which will make more of an impact on health and wellness? Well, that's easy. The PHR.
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