The Plugged-In Patient

Call it the Google lift or the Microsoft bump. This spring, these tech powerhouses announced they were entering the field of personal health records, and...
by | August 31, 2008

Call it the Google lift or the Microsoft bump. This spring, these tech powerhouses announced they were entering the field of personal health records, and that has energized other players in the field. It also has set many in the health IT community to thinking: Will the presence of these Internet giants provide the oomph needed to turn the corner on converting patients' paper medical records into a digital system that connects hospitals to doctors and other providers of health care?

Electronic health records, those digital "medical folders" created and kept mainly by doctors and hospitals, have long been seen as the basic building block of such a system -- one that could wring billions of dollars out of health care spending and enhance its quality and efficiency. But the quest to get medical practitioners beyond paper charts and records has been slow. In the past five years, pockets of physicians, hospitals and other providers have begun to convert their files, but most still need some arm twisting -- as well as a financial incentive and technological boost. At the same time, states have been toiling away at building health information exchanges -- the technological backbone that would facilitate the sending of a patient's electronic records among health care facilities and providers.

In all this, one key group has been overlooked: the patients themselves. It's into that void that Google, Microsoft and other entrepreneurs are marching, offering consumers a way to collect their own medical information and keep it online where they have easy access to it -- and where the patient, and only the patient, decides who else can see it. The recent interest by these companies in patient-designed e-health records has "pushed us to think differently" about an electronic health record system, says Janet Marchibroda, chief executive officer of eHealth Initiative, a Washington, D.C.-based non-profit. "Things will run faster because of their presence. We will think in ways we've never thought about."

The presence of the giant Internet companies, in other words, should stir things up. While issues of privacy, standards and connectivity remain, many of the players working on EHRs may be inspired to see a way of sorting them out.

A Confidence Builder

The idea behind personal health records, or PHRs, is that they could enhance the accuracy of a patient's health information and make it portable.

Some major companies, such as AT&T, Intel, Pitney Bowes and Wal-Mart, make PHRs available for their employees, and many insurance companies do the same for their policyholders. Nationally, however, relatively few people use them. Only 2.7 percent of 1,600 people surveyed this May by the Markle Foundation have gone to the trouble of starting a personal health record -- even though nearly 80 percent saw benefits. The majority of those who failed to set one up cited worries about privacy and confidentiality.

Publicized hack-ins to large databases -- of businesses and government agencies -- make people wary of putting their personal information into a huge database. Those with employer-based options may worry about their bosses gaining access to personal information. Ditto PHRs with health insurance companies. Unfortunately, federal privacy protections do not extend to PHRs offered by private companies. Generally, only health care-related entities fall under health privacy laws known as HIPAA. Clearly, unless users feel their medical information is safe from prying eyes, they will not feel comfortable creating a personal health record.

Beyond questions of privacy are issues of standards and connectivity. While consumers enter much of the information into their own personal health records, they also depend on other sources, such as laboratories, to provide test results electronically.

The smooth flow of data, and standards for sharing that data, are still works in progress, but there have been several significant steps forward. In July, dozens of technology companies, providers, health insurers and consumer groups endorsed a set of practices for personal health records. The framework addresses technology and policy approaches for such things as how consumers will get and control health information about them; how they will authorize the way that information is shared; and privacy and security practices. Among those promising to use the practices were Dossia, a company that provides PHRs for private employees; Google; and the association representing health insurance plans.

Building a Backbone

States are taking steps to encourage the use of PHRs. The California Department of Insurance, for instance, is urging consumers to take advantage of the personal health records available through insurers. The insurance companies' patients' claims already hold medical details in their billing records, such as vaccination history. "It requires no action on the part of the patient," says Darrel Ng, a spokesman for the department. "It makes it better that way."

In Minnesota, the Department of Finance and Employee Relations is seeking proposals that would put each of the state's 50,000 employees in a secure and portable online personal health portfolio. Once that's accomplished, Governor Tim Pawlenty wants to extend that program to all state residents by 2011.

But the real question for states is whether personal health records -- and the boost they will inevitably get from Google and Microsoft -- will help in the development of electronic health records that are fed by doctors and hospitals and flow between them. After all, EHRs -- not PHRs -- are seen as the means of bringing efficiency and savings to the entire health care system.

Most experts believe electronic health records and personal health records will meet up and connect at some point. But if there is to be any flow of records to providers, health information exchange technology will be needed.

Delaware is working on it. Its health information network will provide an electronic delivery system for exchanging data among labs, physicians and hospitals. Databases remain at their place of origin. No records will be kept by the state. The network's job is to convert documents to a standard format, no matter what organization sent them or is to receive them. The information can be sent directly to a provider, an electronic inbox or an automatic printing system.

Delaware hasn't focused yet on how personal health records would be incorporated into its system. But now that the Googles of the world are jumping into the business, "we are watching what's happening," says Gina Perez, executive director of Delaware's network, "and analyzing how it will affect us when we're ready."

Meanwhile in Indiana, the state's health information exchange now delivers information to 10,000 physicians, even though many do not have electronic health records. "The reality is, paper is still a big part of the workflow," says Shaun Grannis, a research scientist with the Regenstrief Institute, a health care research institute. He assumes PHRs will be part of the health information exchange, so one of the important challenges will be how to authenticate a patient to prevent an "imposter" from snooping in his or her file.

Most other states have groups hard at work on this infrastructure. The people following electronic health issues not only are figuring out the technology, Marchibroda says, but learning how doctors and clinical institutions can interact efficiently; what the workflow issues are in doctors' offices; and the problems inherent in large legacy systems.

No one can predict exactly how and when an electronic health record system will come together. But the movement is feeling a lift, and at least one small building block -- the PHR -- is just a click away.

Defining Terms

Electronic health record (EHR): A patient's medical record, maintained digitally in a health care provider's office. Accessed by computer, often over a network, it may contain records from various sources.

Personal health record (PHR): A health record created and maintained by an individual. Stored by an insurance company, an Internet company or in some other system outside the individual's own computer, it ideally contains health and medical history from all medical visits.

Health information exchange: A system for allowing disparate health care organizations to access and retrieve health care information electronically within a region, community, state or other designated area.

Ellen Perlman
Ellen Perlman | Former columnist |