High-Tech Rx for Consumer Health Records

Consumer activism will be needed to help patients exercise their rights to personal health information.

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It's rare that government gets accused of moving too fast. But in only five months, federal incentive payments will be available for healthcare providers that implement electronic health records (EHRs). There is a $20-billion-plus pot of money that can fund these projects, so the gold rush is on. But according to the American Medical Association, there are no EHR systems that currently meet the government's new standards. Of course, those standards were published all of a month ago. And while the incentive payments are the carrot, beginning in 2015, healthcare providers can be penalized for not providing acceptable EHRs.

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So, it's a safe bet we are on the front edge of a massive information technology overhaul to digitize the U.S. healthcare system. Many participants, particularly doctors in smaller practices, will be kicking and screaming all the way. Consumers may not feel this technological pull for a while. But they will, especially in Medicare, Medicaid, and other programs used heavily by older Americans. These large-scale programs with heavy government controls will likely lead the digital charge.

As institutions move to build EHRs and systems to support them, consumer-based Personal Health Records (PHRs) will be a logical companion. There are strong benefits to consumers of having all their health information in one place, where it's accessible by their doctors and authorized caregivers. Older patients, in particular, are more likely to have multiple chronic conditions that require them to see different doctors. Having an accurate PHR can cut down on unnecessary medical tests and the use of conflicting therapies and medications. Family members can better monitor and help manage the medical needs of elderly relatives. In theory, medical errors will drop and care will improve, all for a lower price tag than what is now being spent.

However, some medical research specialists note, no one seems to be asking consumers exactly what they want. Do the experts leading the EHR and PHR charge really expect seniors in their 60s, 70s, and 80s to become expert users of computer-based medical information systems? How are they going to be trained, and who's going to pay for such a massive education effort? Think about the near-heroic job of helping older consumers install digital television antennas. That could be child's play compared with PHRs.

Catherine Desroches is a survey researcher at the Institute for Health Policy at Massachusetts General Hospital in Boston. Physicians and nurse practitioners, among others, can qualify for EHR implementation payments of up to $44,000 apiece over a three-year period, she says. While specific solutions are not yet in place, the resulting EHRs must be provided to patients. Already, Desroches says, lots of physician practices are using secure electronic messaging networks for patient communications, including appointments, prescriptions, and medical questions.

Privacy is one key issue that already is emerging. In practical terms, "those concerns tend to differ sharply among younger and older consumers," she says. Younger people are not as worried about security issues because they're accustomed to seeing personal details plastered over the Web via Facebook and other social networking sites. Older consumers are more worried their personal information may be seen by others.

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Privacy issues also have become a regulatory problem. The digitization of records will raise the odds of identity theft and mistaken sharing of EHRs with unauthorized users. Proposed government regulations to address privacy have been withdrawn because of widespread concern they would not hold healthcare providers to rigorous enough disclosure standards should medical records be misused, lost, or stolen.

But the broader challenge will be consumer acceptance and use of PHRs and related digital communications tools, agrees Dr. Ashish Jha, who teaches at the Harvard School of Public Health and also practices and works closely with the Veterans Health Administration. Although EHRs address very large opportunities to improve the delivery of health services, the consumers who are supposed to benefit from these changes may be the last persons anyone consults. "Is it any wonder that people are surprised that the uptake on the consumer end is not overwhelming," he says. "Consumer use of [electronic tools] has been very modest."

"From a policy perspective, the policy folks have gotten very excited about personal health records as being very transformative," Jha says. "I'm very sympathetic to that idea. But the actual applications and use of these records has been very limited, and the challenges are substantial to more widespread adoption."

A consumer's existing network of healthcare providers -- doctors, hospitals, health insurers, and pharmacies -- are probably using different technology platforms for their digital information and communications. Further, Jha says, they have not been terribly eager to share a consumer's information with another healthcare provider who just might be a competitor. "Lots of providers see personal health records as a way of creating some 'stickiness' with the consumer," he says, and thus have been reluctant to "get on the standards bandwagon."

While EHRs and PHRs are being developed, Jha says consumers still can obtain very helpful support by visiting online health sites and using e-mail to communicate with their doctors. "My dad just turned 71," he says by way of an example. "I think he should have access to all of his own medical information, and control over who he shares it with." Despite concerns over more extensive standards, he doesn't see a reason for doctors to wait to provide such support.

He does see a generation impediment, however. "I hate to say that this is very generational among doctors, but this is very generational among doctors," Jha says. "Older physicians are more likely to be taken aback" by the prospect of moving to electronic records and online patient communications.

However, he urges consumers to seek better solutions and says it's not inappropriate to expect doctors to respond. "It's fair to expect your doctor to say, 'You have a right to this information, and I will help you get access to this, and I will help your family members get access to this.' Anything else [from the doctor] is unacceptable."

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