Personal Health Records (PHRs) have gained more attention lately as more insurers and providers begin to offer ways for consumers to access their health data online. Advocates say the time may be ripe for digital PHRs, as consumers grow more comfortable with the idea of maintaining a health record and new vendors hit the market with easy-to-use products.
PHRs offer patients and their families a central repository for a range of health information: insurance data, prescriptions, test results, permission forms, physician diagnoses, and patient-written health notes. PHRs can be maintained digitally on Web sites, personal computers or even flash drives, and will hold much of the same data found in the electronic record systems used by physicians.
Recent studies confirm a growing consumer acceptance of the PHR concept. An October study from the Markle Foundation, NYC, showed 72 percent of surveyed Americans favored the creation of national healthcare exchange that would allow for PHRs. A 2004 poll conducted by Rochester, N.Y.-based Harris Interactive revealed 84 percent saw a personal health record as "a good idea," and about 40 percent said they would be likely to start a digital medical record soon. That's good news for healthcare providers and software vendors that see a bright future for patients managing their healthcare information, just as they might manage their financial portfolios.
One of the major challenges to PHR development has been a lack of industry standards. But in November two standards organizations agreed on a strategy for developing a core data set in the "Continuity of Care Record" (CCR) standard. Health Level Seven, Ann Arbor, Mich., will write an implementation guide for CCRs being developed by the West Conshohocken, Pa.-based ASTM International.
Proponents see a global CCR platform as one of the underlying components of an electronic health record (EHR) and a keystone to jumpstarting PHR adoption. Cooperation on the standards progress could push a wider adoption of PHRs among consumers, notes Barry Hieb, a research director in Stamford, Conn.-based Gartner's healthcare division.
As the federal government moves to implement the national health information network, the ability of consumers to use interoperable software to manage and share healthcare information will only grow, Hieb notes.
Spreading the word
Still, getting PHRs into users' hands has been difficult. Erika Fishman, senior research analyst for Manhattan Research, NYC, estimates only around 200,000 to 500,000 Americans have a digital PHR similar to those offered by their insurers or other sources. "Most people don't know about the PHRs. They have no clue what they are," she says. "But we believe there are 30 million people who would have a 'likelihood' to use PHRs if they were more widely available."
Currently, several large health maintenance organizations (HMOs) offer members an opportunity to create their own PHRs on patient portals, but few members know anything about them, says David Lansky, executive director of the Personal Health Technology Initiative at the Markle Foundation, NYC. But those that are marketing PHRs through clinic communications, televisions and so forth-including the Seattle-based Group Health Cooperative and the Palo Alto Medical Foundation, Calif.-have participation rates in excess of 15 percent of their patient population, he says.
Pushing PHRs will become a marketing advantage for HMOs, Lansky predicts. "[HMOs] can say 'we make you, the consumer, part of the care process.' They will see how consumers like how the PHR can help them refill prescriptions, see lab results online and, eventually, assist with disease management."
But HMO-driven PHRs may not be the end-all for consumers, says Jill Burrington-Brown, manager of practice resources at the American Health Information Management Association (AHIMA), Chicago. If a patient leaves an HMO for a competitor, the PHR information may not transfer easily to a new insurer, she notes. An HMO-based PHR also doesn't leave much room for recording visits to alternative healers, plastic surgeons and other treatments. The key to the PHR, she contends, is putting the management of health information in the patient's hands, not physicians or insurers, she says.
Testing new boundaries
Physicians are concerned about liability issues involving data recorded by a patient since it has not been vetted by the medical establishment, Hieb explains. Patients also may intentionally withhold information for any number of reasons, or else use inaccurate terminology to describe medical issues they list in their PHRs. "Let's say you're a physician and a patient asks you about treating his migraines," he says. "You find they may not have been diagnosed by a doctor. You do not know what part of PHR is professional grade and which is patient opinion."
Yet Burrington-Brown says she doesn't buy into the claim that physician fears are standing in the way of PHR adoption. Patients who keep detailed health records tend to be much more accurate in describing their self-treatment than "someone sitting down and telling me what happened last month" based on memory, she says.
Physicians may also balk at requests to send medical information to the many PHR systems now being sold, Hieb notes. A doctor with a 500-patient practice may not have time to transmit patient data to a variety of PHRs, nor have there been any financial incentives to do so. And patients themselves may not be particularly excited about monitoring their own records as yet another part of a growing do-it-yourself culture, he contends.
"Consumers are all over the map. Some patients don't want to hear that they have a disease, others spend days in the library reading about what they have," he says. "PHRs may be good for some patients, but they're not the magic bullet for healthcare."
Ready or not, here they come
Meanwhile, software providers are increasing efforts to market PHRs through providers and health plans as well as directly to consumers. When MyMedicalRecords.com, a Los Angeles-based online site where consumers can store all their health-related records in .PDF format for a monthly fee, began a marketing campaign last fall to recruit new consumer and physician users, the company joined a growing list of almost two dozen vendors that offer fee-based and/or free PHRs to consumers.
The Web-based system allows physicians to fax a patient's documents to secure fax phone numbers assigned to the company's clients. The faxed documents-from handwritten prescriptions to physician notes-are then stored in a .PDF format. "The only thing they [physicians] need is a fax machine," says CEO Robert Lorsch.
Although Lorsch says he's heard much about electronic health records and how they would form the basis of a consumer's PHR, he promotes the idea of an easy, inexpensive alternative for people to create their own digital records without having to wait for industrywide standards and buy-in from providers, a process that could take years.
Another new approach comes from MedCommons, Watertown, Mass. The company acts as a patient data "bank" by storing patient diagnosis and imaging data in common formats such as .PDF and DICOM as well as the CCR standard, says Adrian Gropper, M.D., MedCommons' chief science officer. MedCommons' subscribers control the information but can allow physicians to access the data without requiring them to buy special software or hardware.
For the time being, finding vendors that offer PHRs isn't the problem. Showing consumers and providers their value and role will be the turning point for this technology.
Frank Jossi is a freelancer writer in St. Paul, Minn.