Warning on Storage of Health Records

In an , two prima research workers warn that the entry of large companies like and into the field of personal wellness records could drastically change the pattern of clinical research and raise new challenges to the privateness of patient records.

The authors, Dr. Kenneth D. Mandl and Dr. Isaac S. Kohane, are longtime advocates of the benefits of electronic patient records to better attention and assist people do smarter wellness decisions.

But their concern, stated inch the article published Wednesday and in an interview, is that the medical community and policy shapers have got not begun to cope with the deductions of companies like Microsoft and Google becoming the hosts for huge supplies of patient information.

The reaching of these new corporate entrants, the writers write, assures to convey “a seismal change” in the control and stewardship of patient information.

Today, most patient records stay within the wellness system — in doctors’ offices, , clinics, wellness care organisations and pharmaceutics networks. Federal Soldier ordinances regulate how personal information can be shared among wellness establishments and insurers, and the regulations curtail how such as information can be mined for medical research. One demand is that research workers have got no entree to individual patients’ identities.

Under the current system, people can bespeak their ain wellness records, but it is often a cumbrous procedure because information is scattered across respective institutions.

As portion of a pushing toward greater person control of wellness information, Microsoft and Google have got recently begun offering Web-based personal wellness records. The diary article’s writers depict a new “personalized, wellness information economy” inch which consumers state physicians, infirmaries and other suppliers what information to direct into their personal records, stored by Microsoft or Google. It is the individual who make up one's minds with whom to share that information and under what terms.

But Microsoft and Google, the writers note, are not jump by the privateness limitations of the Health Insurance Portability and Accountability Act, or Hipaa, the chief law that modulates personal information handling and patient privacy. Hipaa, enacted in 1996, did not expect Web-based health records systems like the 1s Microsoft and Google now offer.

The writers state that consumer control of personal information under the new, unregulated Web systems could open up the door to all sorts of selling and false advertisement from political parties eager for valuable patient information.

Despite their warnings, Dr. Mandl and Dr. Kohane are enthusiastic about the possible benefits of Web-based personal wellness records, including a patient population of better-informed, more than personally responsible wellness consumers.

“In very short order, a few big companies could throw bigger patient databases than any clinical research centre anywhere,” Dr. Mandl said in an interview.

But the writers see a demand for safeguards, suggesting a mixture of federal ordinance — perhaps extending Hipaa to online patient record hosts — contract relationships, enfranchisement criteria and consumer instruction programs.

“I’m A great truster in patient liberty in general, but there is going to have got to be some measurement of limited paternalism,” Dr. Kohane said in an interview.

Peter Neupert, the frailty president in complaint of Microsoft’s wellness group, said that he admired the writers and that they raised some of import issues. But he resisted the suggestion of extending Hipaa to newcomers like Microsoft and Google.

“Philosophically and politically, I am disbelieving of the conception of paternalism,” Mr. Neupert said in an e-mail response to the article, which he was sent, and to the authors’ comments. “It never turns out to be ‘limited.’ ”

Designing a wellness records system that clearly informs consumers and necessitates their consent for information utilize is the better approach, Mr. Neupert said.

“We have got to gain the consumer’s trust for our brand,” helium said. “So Iodine can conceive of a scenario where we have got a 3rd political party verify that our system plant the manner we asseverate it does,” much as an hearer reappraisals a company’s fiscal reporting.

Dr. Mandl and Dr. Kohane are doctors and research workers at Children’s Hospital Boston, the primary paediatric instruction infirmary of the Harvard University Checkup School.