Google gave up on electronic personal health records, but we shouldn’t

Which will improve a person’s health more? Running around the block for 20 minutes or sitting at a computer entering their cholesterol and blood pressure readings?

The answer is one reason why Google’s decision to end its electronic personal health record (PHR) service offers important lessons about health IT and will affect the way patients get their health information and the way physicians communicate with their patients.

A recent survey found that only seven percent of Americans had used online personal health records, and less than 3.5 percent used them with any frequency. Probably more people still believe in laetrile than update their on-line medical records. And yet we are told PHRs and web portal-PHRs will revolutionize medical care by giving patients control over their data, reducing medical costs, and, most important, making everyone healthier.  So why don’t people take advantage of the health information that programs such as Google Health literally put at their fingertips?

There are several reasons.

Perhaps most basic is that while knowledge may be power, it isn’t willpower. I’ve written guidelines for nutrition-education curricula, but I still eat too much. Recording my daily caloric intake into a computer program would undoubtedly confirm I eat too much. It might also suggest alternative menus. I know all that but if I forget, my pants will remind me without any digital interface.  I’d be better off using the computer as a dumbbell for weightlifting.

Second, most personal health records do not automatically incorporate information from one’s healthcare providers’ electronic health records (if they even have them). People are stuck with the tedious task of entering the information themselves.

Third, few people are prepared to confront an apparently dire medical finding on their home or work computer screens. It must be the worst way to discover one has a life-threatening disease. More important, because many illnesses are quickly and successfully treated, the absence of information on prognoses and options will undoubtedly generate unneeded panic.

Fourth, instant viewing of medical test results on patients’ computer screens will undoubtedly generate lots of questions and emails to physicians. Here we face four problems: 1.  HIPAA does not allow regular email for confidential health-related information, and one’s physician thus risks serious penalties for responding to patients’ emails; 2. Insurance companies have not agreed on how or if to pay physicians for their time emailing with patients; 3. Liability for a doctor’s typos and advice over the internet is still unknown; and the 4. There are unknown tradeoffs between faster patient emails about symptoms vs. avalanches of questions about insignificant changes in the now online lab reports.

Fifth, the people who most need to keep close track of their medical data are often very sick, elderly, and small children. Unfortunately, many of these patients are also not great computer users.

Six, web portals to patients’ medical records their doctors’ offices require a password. But is a password sufficient guarantee of privacy for something as intimate as medical information? Consider with whom a patient may not wish to share easily emailed information about pregnancies, genetic proclivities, physical or mental limitations, STDs, psychiatric treatments, or life-altering diseases.  Physicians face these issues daily; patients seldom do.

So what can be done to boost the use of personal health records?

We should encourage (require?) healthcare technology vendors to agree to common data formats and use rules that would allow information to automatically flow from doctors’ offices, labs, and hospitals into patient’s personal health records. Google Health was criticized for poor usability, ironic given Google’s model as master of user-friendly programming. But, Google Health was hampered by the need for patients to enter their own (often incompatible) data. If we can achieve the data fluidity we have in most other realms, this problem dramatically lessens.

At the same time, we must recognize that some information is best conveyed in person by experienced medical professionals. Just because we can send information instantly doesn’t mean it’s always a good idea to do so.

The automatic flow of data would make these systems far more user friendly, especially to the elderly and sick. Freed from data entry duty, the health records software could focus on presentation of information with better graphics. We need to make visualizing healthcare information easier and therefore easier to understand.

We need to alter privacy rules so physicians can safely respond to patients’ email questions while protecting sensitive information. Telephone use norms emerged slowly, eventually encompassing even cell-phones. Emails via healthcare-system websites are considered safe, but all other emails travel on legal quicksand.

Similarly, the legal liabilities associated with these electronic doctor-patient interactions are still in flux. Typos or quickly read messages on mini-screens are simply part of the email landscape. Our liability laws have to reflect that common-sense reality.

Insurance companies will have to figure out how to reimburse doctors for reviewing and responding to patients’ emails. When patients view their information via the internet, they are going to have questions; and not every question requires an office visit. The same process that provides instant information can facilitate fast responses.

Some healthcare systems already provide PHRs without requiring patients to be data entry clerks, eg, Boston Children’s Hospital’s Indivo, Geisinger’s MyGeisinger, VA’s myVA, and Kaiser Permanente’s program, among others. These systems incorporate exactly what the healthcare IT industry has resisted because of concerns about its (incompatible) proprietary software: data standards and rules requiring sharable information—interoperability. The successful systems also highlight differences between tethered vs stand-alone PHRs. Google’s was stand-alone and thus could not overcome the chaos of non-standardized information formats and vendors’ reluctance to play nicely together. (Of course, physicians confront similar problems integrating information on their EHRs.)

Ironically, the US faced such problems before: we had dozens of railroad gauges, hundreds of time zones, and even areas with both left- and right-hand driving rules. In all cases, the federal government established standards, and the people, the economy, and especially the resistant industries flourished. Industry claims that such standards would restrict innovation were turned on their heads.

The government is providing billions to the healthcare IT industry via pass-throughs to hospitals and doctors’ offices to buy and install stunningly expensive software. We all hope such technologies will eventually improve care and save money. But a first and inexpensive step should have required healthcare IT vendors to establish or accept common data formats and information sharing.  It’s still not too late. Were such agreements in place, both patients and physicians would benefit from being able to see, rather than type, essential health information. And we’d all have time left to exercise, or at least prepare healthier food.

Google Health confronted a tower of healthcare information Babel. If health information could have been shared, Google would still be offering that service. Google’s efforts should be commended; its demise should not be a death knell for such services, but a beacon to guide our next steps.

Ross Koppel is a professor of Sociology at University of Pennsylvania, Philadelphia and on the faculty of RAND Corp. He is also Chair of the Evaluation Working Group, American Medical Informatics Association.

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