Duke Takes E-Health Record Message To The People

Duke University is hoping to get at least 20 million Americans to participate in a new Health Data Exchange initiative.
When the word got around that the Federal Trade Commission had a national Do Not Call Registry, tens of millions of consumers signed up in just a few months. People saw the incentive: Eliminating those annoying dinner-time telemarketing calls.

Duke University is hoping to spark similar enthusiasm about not having to fill out the same annoying medical history forms every time a patient seeks medical care. By spreading word about the value of electronic medical records, it's hoping to prompt at least 20 million people to participate in a new Health Data Exchange initiative being launched by Duke's Fuqua School of Business.

Duke is trying to build consumer interest in the idea before it has the technology in place. The thinking is that the health-care industry hasn't eagerly embraced information technology so far, and it will take consumer demand for its benefits to make it happen. "There's been no national market force pushing electronic health records to consumers," says Brian Baum, Duke senior scholar and director of the Health Data Exchange,. Baum also is the former chief marketing officer at Cap Gemini Ernst & Young.

Duke's vision is a national health-data exchange that will let consumers create and access their own electronic health records, Baum says. Duke's vision is for consumers to provide information pertaining to their medical history, with the information supplemented by additional clinical information from doctors and health-care providers who also sign on to participate in the exchange. Those doctors also could access the exchange.

In addition, consumers would have the choice of also allowing unidentifiable data to be collected in aggregate and stored in repository that can be used for research and analysis by others, including pharmaceutical companies and biomedical firms developing new products, and possibly public-health officials monitoring for bio-terrorism and other patterns about health trends. Those users would pay for access and support the system.

The financial details haven't been worked out, Baum says. The fees paid by the users of the data might be modeled after the sort of transaction fees charged to retailers and others who accept credit cards for payment by customers. The goal is to attract at least 20 million consumers to contribute data to the repository and participate in the exchange.

Besides electronic-health records potentially reducing repetitive paperwork for patients, other benefits for consumers might include cost and time efficiencies of avoiding duplicate medical tests when doctors don't have access to paper-based records, Baum says.

Duke is building alliances with business and special-interest organizations that can help create consumer awareness, Baum says, such as the National Business Coalition on Health, which represents 9,000 midsize employers, and AARP. Duke's goal is to build consumer awareness of the exchange among millions of people over the next six months or so, he says.

As for the technology supporting the exchange, Duke hopes to piggyback on existing pilot programs, which Baum declined to name. There are a number of regional health data-exchange efforts, including one in Santa Barbara, Calif., as well as private/public projects, such as the eHealth Initiative, that are seeking to create the technology infrastructure needed for the sharing of patient electronic health records.

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