In the months since the U.K. slammed the breaks on its controversial patient data sharing scheme, officials have tried to hit upon a model that a now wary public will accept. And this looks set to result in a scaling back of the project's initial ambitions, with doctors calling for it to become an opt-in system and the group providing the technology admitting the program will start small.
|HSCIC's Kingsley Manning|
Health and Social Care Information Centre (HSCIC) Chair Kingsley Manning gave an update on the project at an OPEN Health Big Ideas event in London attended by PMLiVE. Manning now expects the program--called Care.Data--to start in the autumn, but only at 100 healthcare centers. The original plan was to gather patient data from more than 8,000 general healthcare practice centers in England. And even the scaled down pilot project discussed after the scheme was delayed earlier this year proposed enrolling up to 500 centers.
While the pilot project will be small in scale, it has big implications for the future of healthcare and drug research in England. "On the basis of that trial run a decision will be made about [whether] to roll it out across the country as a whole at the end of this year or the beginning of next," Manning said. If the full project is green-lighted it would open up a trove of cradle-to-grave health data of great value to drug researchers and other groups. Questions remain about whether the public want their health data to be used in this way, though.
The family doctors who gather and currently silo patients' healthcare data are aware of these doubts and conscious of how appearing to ignore them could affect their relationships with the communities they serve. At the British Medical Association's annual meeting, members voted in favor of a motion to make Care.Data an opt-in system, as opposed to the opt-out model currently proposed. The motion said Care.Data "lacks confidentiality" and creates the risk doctors will lose "the trust of their patients who may feel constrained in confiding," the BMJ reports.