PHRs: You Get What You Pay For

Concerns about the privacy — and accuracy — of electronic health records (EHRs) hit the fan when Lisa Wangsness of the Boston Globe picked up an e-patients.net blog posting on how a patient tried to transfer his records to Google Health to form his own personal health record (PHR).

From the Boston Globe, April 13, 2009

“WASHINGTON – When Dave deBronkart, a tech-savvy kidney cancer survivor, tried to transfer his medical records from Beth Israel Deaconess Medical Center to Google Health, a new free service that lets patients keep all their health records in one place and easily share them with new doctors, he was stunned at what he found.”

Patient deBronkart found gross inaccuracies in his records, attributable to many reasons. Some:

* information was extracted from diagnostic codes rather than the actual records
* diagnoses were sometimes undated, so a condition from five years ago appeared to be present today
* multiple personnel had access to the electronic record and could have made changes without attribution

My conclusions:

1. Capital Health’s new hospital will, I believe, depend on EHRs. The physician’s practice on Terhune Street is, after a year’s preparation, now paperless. Should we be leery of this new system?

2. Perhaps not, if we consistently ask for copies of our own records (PHRs). This may not be important for someone in good health, but for the chronically ill or the cancer survivor, it can be a matter of life or death to “catch” any inaccuracy.

3. Zweena Health, a Princeton-based firm (I am an unabashed fan and a beta tester but am not paid by Zweena), is a small company that appears to have solved this dilemma. It helps you maintain your online Personal Health Record, to which you and your doctors have access. Every time you visit a doctor, Zweena elicits the record and posts it online, so you can compare it with what you think the doctor told you, and so you can share it with other doctors.

Zweena appears to have solved the privacy and accuracy issues. Now it needs to solve its financing issues and get employers to enroll their employees. Unlike Google, it levies a charge. (What was that old saw, ‘you get what you pay for’?

4. EHRs are going to get a bad rap from this dust-up. Is it deserved? Will it help to throw money at the accuracy problem? I don’t know either answer.

5. Blogs can be powerful (the Boston Globe picked up this story from a well-established blog) but it takes a newspaper to bring an issue to national attention. All the online shrieks and murmurs about the hazards of EHRs and PHRs do not have the power of an investigative piece in print media.

Of course, I’m biased, but then that’s why I’m writing a blog.

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