Personal health records (PHRs) received a significant profile boost last year when a consortium of large employers led by Bentonville, Ark.-based Wal-Mart and Santa Clara, Calif.-based Intel announced plans to develop an electronic PHR framework that would cover some 2.5 million employees. That announcement, combined with a number of other employer, payer, healthcare group and government PHR initiatives, added to the momentum building around the technology.
Computer-based PHRs provide patients with an electronic data repository for health information that can be accessed via the Internet, stored on a personal computer, or even carried on a portable flash drive. PHR use is still relatively low among patients, whether paper-based or electronic, but interest is growing — provided that PHRs are easy to use and secure. According to a recent report from the New York-based Markle Foundation, 96 percent of patients surveyed think it is important for individuals to be able to access their medial records, and 65 percent would like to have electronic access to that data.
Widespread adoption, however, will require a shift from traditional episodic care to a more continuous healthcare model (see Disease Management trend, page 24), as well as a more concrete business case for physicians. And a truly independent, patient-controlled PHR will rely on secure, interoperable data exchange among all stakeholders.
"In an idealized world, this would not be tied to a payer or provider," says Thomas Handler, M.D., research director at Stamford, Conn.-based Gartner Inc. "It would exist independently and take data from multiple sources."
Response to PHRs has generally been positive. Patients are able to get a clearer picture of their overall health, and physicians are provided with another decision-making tool.
"This has allowed us to change the way we look at and manage care, in a way that is more consistent with the way diseases work," says C. Martin Harris, M.D., CIO at the Cleveland Clinic, which operates the MyChart patient portal. "If we see that a patient's glucose is abnormal, we can react as the values are entered, as opposed to looking at those levels when the patient comes in a few times a year."
Paying for PHRs
While patients and providers are more receptive to the concept, funding for PHRs remains a problem outside of payer- or hospital-owned systems. Congressman Patrick Kennedy (D-R.I.) introduced a bill in September that would provide a financial incentive to physicians to encourage PHR creation, but the overall economics remain cloudy.
That's why stakeholders with the clearest business cases have taken the lead on PHRs. Major insurers like Chicago-based Blue Cross Blue Shield; Hartford, Conn.-based Aetna and Minnetonka, Minn.-based UnitedHealthcare offer PHR products to members (typically free of charge) that are largely populated with claims data.
"By giving this information to providers and members, we can help members be more aware of what they can do to participate in their own health management, and help providers deliver care more effectively and efficiently," says Kim Reed, M.D., senior medical director at Blue Cross Blue Shield of Illinois, which offers a Personal Health Manager to its members.
However, claims data doesn't necessarily paint a complete picture of a patient's history, and patients would lose those records if they changed insurance companies — an increasingly frequent occurrence.
In response to those issues, Washington, D.C.-based America's Health Insurance Plans (AHIP) and the Blue Cross Shield Association have teamed up to develop model PHR standards that would allow for portability among payers, which they hope to incorporate by 2008.
In the meantime, large employers are setting up PHRs for their employees, with an eye toward reducing healthcare costs. The Dossia patient data system, created by Wal-Mart, Intel, Applied Materials, BP America and Pitney Bowes, was also developed with long-term cost savings in mind. Another employer-sponsored system in Kansas City, called Healthe Mid-America, could save participating companies an estimated $15 million over three years.
PHR vendors also continue to roll out products directly to consumers. Delray Beach, Fla.-based Passport MD, for instance, lets users create a basic PHR at no cost, but charges a fee for collecting and updating information from providers. Other vendors, including MyMedicalRecords.com (Los Angeles), CapMed (Newtown, Pa.), and Medem (San Francisco) with its iHealthRecords product, provide similar services.
Not perfect yet
The problem with all of these approaches is that there is no way to ensure that all stakeholders are updating the record. Although standards for electronic data exchange are moving forward, many records remain on paper.
That's one reason why Dean Sittig, Ph.D., director of applied research in medical informatics at Portland, Ore.-based Northwest Permanente, thinks that PHR adoption will follow more widespread use of electronic medical records (EMRs).
Says Sittig, "The first thing we need are standards in electronic medical records. We don't have that semantic interoperability yet."
Data access is just the first step in the process, however. Paul Tang, M.D., chief medical information officer at the Palo Alto Medical Foundation in California, says that patients using Palo Alto's eVisits system are most interested in interactive tools that allow them to participate in their own care. "The number one tool our patients like is having test result access, and the number one thing they plot is lipids," says Tang. Patients are able to see how their diet affects their health, which in turn encourages them to make dietary changes.
Interactivity is at the heart of a new $4.1 million grant program established by the Princeton, N.J.-based Robert Wood Johnson Foundation (RWJF) at the end of 2006. Eight teams of researchers received grants through Project HealthDesign to develop flexible, PHR-based patient applications.
"A lot of work has focused on how to get individual access to records online," says Stephen Downs, senior program officer and deputy director of the Health Group at RWJF. "We wanted to know how to spur more innovation around uses of the record."
Downs adds that use of PHRs will expand once the healthcare community fully defines exactly how they will work and what the benefits are. "We are at a time of emergence of PHRs," he says. "They haven't fully gelled yet. We need to experiment and stretch our imaginations."
Brian Albright is a contributing writer based in Columbus, Ohio.