U.K. tries to revive 'dead duck' patient data sharing plan

The U.K.'s House of Lords has debated changes to the controversial and widely criticized health data sharing initiative. Changes to the plan are designed to alleviate the concerns of the public and medical community, but with the program already tarnished one politician labeled the initiative a "dead duck" that won't advance over the next year.

Lord Hunt

Lord Hunt of Kings Heath, the health minister for the Labour party, made the comments in a House of Lords debate to decide how to revive the plan, which would make more patient data available to researchers. Worries about who would have access to the data, what they would use it for and the risk of deanonymization caused a backlash against the initiative, prompting the health service to postpone implementation for a second time in February.

The delay is supposed to give organizers time to address the worries, but some think it is a futile task. "My own view is that this is a dead duck. The Government will not be in a position to enable the scheme to go ahead any time before the election because so much public confidence has been lost. This is not surprising," Lord Hunt said. Parliament will break up to prepare for the election on March 30, 2015. Before then breaks for whitsun, summer, Christmas and other events are also scheduled.

Much of the debate this week centered on whether an amendment proposed by the House of Commons does enough to clarify who can use patient data and for what purposes. The vagueness of the wording--something for which the initial plan was criticized--has already come under fire. And small but important differences in beliefs about who should have access to health data remain. Some fear the use of data for "promotion of health" initiatives is too restrictive, others think it is too liberal.

- read Reuters' coverage
- and the debate transcript

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