Congressman Ryan outlines vision for consumer control of e-health records

Janesville, Wis. - Republican Congressman Paul Ryan believes healthcare consumers should get a piece of the action when they agree to share their health data with researchers.

Ryan, who is serving his fifth term and faces re-election this fall, is one of 78 co-sponsors of a bipartisan healthcare IT bill that would establish independent health record trusts (IHRTs) that Ryan described as “kind of like a credit union for medical records.” In fact, the trusts would be operated by member-owned institutions, much like credit unions.

Under the health trust plan, individual electronic medical records would be housed in a data bank governed by consumers. Ryan said those records can be sold in a HIPAA-compliant way to researchers that purchase this data. The revenue - what Ryan called a dividend - would be split between the data bank, which would use its cut for operational revenue, and the consumer who chooses to sell his or her data.

HIPAA, the Health Insurance Portability and Accountability Act, is a 1996 law that mandates the portability of health insurance from employer to employer, and regulates the disclosure of protected health data.

According to Ryan, the trust would have to obtain a patient's consent before releasing health information to doctors, hospitals, or other providers. For emergency room visits, IHRTs would provide caregivers access to limited information from the patient's record without prior authorization, but the consumer would have an opt-out option on the exchange of this data. In effect, the bill would create a nationwide health information network. Consumers would choose whether to file their medical information in an account with an accredited IHRT. The trust would be certified and regulated through the Federal Trade Commission, which would develop standards for the establishment of the trusts.

“So I'm Paul Ryan, I'm 38 years old. I'm a white male. I would sell my data without my name or specifics, but as a 38-year-old white male from Wisconsin,” he explained.

Taxpayer money, Ryan noted, would not be part of the financing mechanism. Ryan said the dividend would help finance the dissemination of information technology, which is dependent on interoperability. Ryan said the bill requires interoperability, the ability of disparate computer systems to exchange information.

To ensure that up-to-date medical information can easily travel to doctors or hospitals, the bill would make demands on healthcare IT vendors. “The software packages that are out there - Epic, Cerner, McKesson, General Electric - they would have to have patches on their software systems for interoperability, for universal connectivity,” he said. “To me, a lot of this is simply requiring interoperability among software providers so that these hospital and physician systems do talk to each other.

“You have to have that common architecture in order to have a system where we can compare apples to apples throughout the health IT system.”

Amending the rules

To be eligible for an IHRT, individual consumers would submit their medical information to the trust, or allow the trust to retrieve the data, and enter into a privacy protection agreement. It would be up to patients and their doctors or other healthcare providers to update the records after each episode of treatment.

Ryan said physicians that are having a hard time financing the necessary hardware and software will need help in the form of modifications to the Stark Law.

“I believe you should amend the Stark anti-kickback rules to allow hospitals to supply physicians, or any other provider, with these initial hardware and software updates,” Ryan said. “I'm also open minded to improving re-imbursement for physicians for a one-time purchase of this kind of equipment, but I do not think the federal government should be in the position of constantly paying for this stuff.”

Should the government remain in that position, Ryan said that would stunt innovation and development, and the federal government would be in “too central a role” in designing and controlling how software and hardware is integrated.

“All that I care about is that it's interoperable, that pieces of the system can talk to each other, but I want McKesson, Cerner, and GE competing and innovating on interoperability,” he added.

Under his plan, Ryan reiterated that health consumers would not be expected to contribute to the financing. “It would be financed by the researchers, whether it be insurers, actuarial firms, or medical researchers paying for the data, which they now pay for,” he said. “These payments would go to finance these data trusts.

“There is a payment system out there, but I want to convert that over to the data trust to help get these medical IT records up and running.”