Thursday, May 10, 2007

Label me skeptical: Personal Health Records as healthcare panacea?

I recently received the following solicitation from a colleague via an informatics mailing list:

To anyone outside California, please forward this to all affected individuals you know in California who may not be on this list. To anyone on the list living in California, please review the text of this bill and encourage your state Senator to support it: SB 320 - California Health Care Information Infrastructure Program (link). A brief phone call is all that it takes. Provide your name, city, the bill number, your position, and if they give you additional time, the reason(s) why. The bill is currently in Senate Appropriations, presumably waiting for budget negotiations with the Governor's office. The Governor's office needs to hear from Senators, especially Republican ones, that this needs to be included in the budget (a mere $350K out of our $100B+ budget). It's pretty cost-effective as government spending goes.

The bill seems well-intentioned. However, I have significant doubts and skepticism about the PHR ("personal health records") inclusion in this bill.


... "Personal health record" means an electronic, universally interoperable, resource of health information based upon an individual patient's health history that is available to the patient throughout his or her life and is needed by an individual to make informed health decisions. The personal health record is stored and maintained in a secure, private environment and only the individual patient may determine rights of access to the record. The personal health record is separate from, and does not replace, the records of a provider.

... Within one year of the establishment of the program, and updated annually thereafter, the California Health and Human Services Agency shall develop and deliver to the Legislature a strategic plan, which shall include the establishment of incentives and standards that foster the adoption and use of electronic health records by health care providers and consumers in the state, and the integration of personal health records for all residents of the state in order to improve health care quality, safety, and efficiency, and to reduce health care costs.

Generally, when government plans to invest millions of dollars in a technology, there should be evidence that the technology really does offer the benefits claimed.

I recently attended a talk that presented an interesting concept: PHR development is a very different endeavor from nearly
any automation effort in the past, since there is no older, non-electronic process that the electronic PHR is going to automate. Hence there are a lot more unknowns then, say, automating a doctors' office chart, or an accounting system that started on paper.

Should government not wait until such issues are better-researched before setting up a bureaucracy and investing taxpayer dollars in what seems like an experimental effort? Is this part of the bill a utopian effort destined to waste a lot of taxpayer money?

Perhaps I'm simply behind on PHR research. Can anyone steer me to compelling evidence that a PHR will save money and "is needed [or usable] by an individual [i.e., of varied educational/ cognitive backgrounds] to make informed health decisions" and that "an individual" or some third party can actually be a reliable steward and quality assurance agent of such information?

Perhaps most importantly, with respect to many of the issues of corporate abuse of the healthcare system brought up in HC Renewal, can such a tool exist and be maintained by third parties with only the patient's best interests in mind?

Label me skeptical.

-- SS

Addendum: the amended version of the bill changes the language somewhat:

Within one year of the establishment of the program, and updated annually thereafter, the CalOHI shall develop and deliver to the Legislature a strategic plan, which shall include the identification of resources to assist health care providers in adopting standards or promoting electronic health records and personal health records ... The identification of incentives that encourage the adoption and use of personal health records and electronic health records, including a study of alternative Medi-Cal reimbursement strategies, pay-for performance strategies, and tax incentives.

This still sounds like a state-sized PHR experiment that is not adequately grounded in empirical evidence that PHR's - whatever they might turn out to be - solve real-world healthcare problems.

And, there is certainly abundant evidence that good intentions and new technology can lead to unintended consequences.

-- SS

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