Monday, March 30, 2009

Personal Health Record, Vital to Personalized Medicine

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 of Connecticut of CT, 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 record stored on your USB may 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 was an editorial entitled-

"Your Doctor's Office or the Internet? 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.


Kevin hauser said...

My name is Kevin Hauser and I am the Director of New Business Development for MedeFile International. I had come across your blog " Personal Health Record, Vital to Personalized Medicine" in doing some research. I believe MedeFile exemplifies what your are tring to educate patients about.
In brief, MedeFile is an electronic medical records management service that collects, digitizes, stores, and organizes all of our member's ACTUAL medical records. MedeFile gives you the member, the ability to access your complete medical history 24 hours a day, 7 days a week, from virtually anywhere in the world. In addition, we provide each full MedeFile member with a MedeDrive. The MedeDrive is a portable USB device that works with any Windows based PC. This device simply plugs in to a USB port and instantly auto loads that member's vital emergency information (Allergies, Medications, Medical Alerts, Emergency Contacts, etc). The MedeDrive also has a password protected area that contains all of that member's ACTUAL medical records as well. Our system also provides for the storage of Advanced Directives (living Wills, DNR's, Health Care Proxies) The MedeDrive does NOT require any internet connection, and can be updated anytime with no additional charges. We have been featured on various news segments with regard to the devastating Hurricanes we have seen in the recent years. MedeFile may also qualify as a medical expense under a Medical Information Plan in IRS Publication 502.

It is important to note that MedeFile does all of the daunting leg work of collecting records for our clients, this way they can focus on being healthy.

I urge you to visit our website at for more information. Please feel free to contact me with any questions that you may have. Thank you in advance.

Andrew said...

The "industry standard" for "privacy" for health records is a shelf of loose paper populated by near-minimum wage employees. That is the ground for any conversation about patient records.

I just want to publicly state that because it would be annoying to have this post thrown back in my face someday.

Google security: "Although, with the security problems that Google has been having lately, I imagine perhaps a record stored on your USB may be superior......Maybe.....I am not certian about that."

Probably not. You can safely ignore these story about Google's security compromise ---it's only a story at all because Google's technological sophistication is so ridiculously superior that any perception of a breach seems like a story by comparison. Google is so confident ---even arrogant--- about their security that they'll announce breaches publicly. For any other company, this would be considered an exacerbation of the security exploit.

Regarding your examples: the Gmail story is a nothing, and the TechCrunch re-report about the Google Documents bug is a very minor breach that at its worst only meant a tiny fraction of users had possibly exposed a document for a short period of time with a person that they had previously shared a document.

USB Thumbdrive: Imagine this women handed you a scratched floppy disk. She tells you (in person, in the busy ED) that the disk is encrypted, and that she's not sure what the password is, but she thinks that the password is "password 1 with a zero" or maybe she changed it. Oh, and you need special software to read the disk. Fortunately, she's helpfully brought a box of floppy disks so that you can install it.

Have fun with that, Steve.