Fact Sheet 3: How to participate in the Public Consultation Process for the “Development of a Framework for Secondary Use of My Health Record System Data” project
NHS care.data scheme closed after years of controversyNHS England was criticised for poorly explaining the purpose of the scheme after more than one million people opted-out
The government's controversial care.data NHS information sharing scheme has been closed. The decision, announced by minister for life sciences George Freeman, follows a review into safeguards around the sharing of patient data by National Data Guardian Fiona Caldicott.
Though care.data has been closed, Freeman said NHS England and the government "remain absolutely committed to realising the benefits of sharing information" to improve patient care.First announced in 2013, the NHS England programme aimed to bring together health and social care information from across the NHS for the benefit of "patient care". The pseudonymous data could then be used by researchers to develop new treatments and assess performance of NHS services.
The beleaguered scheme faced almost relentless criticism since it was first announced three years ago. Concerns centred around the sharing of sensitive medical information with commercial companies without the explicit consent of patients. More than one million people opted out of the scheme.
Data on stays in NHS hospitals, known as hospital episode statistics, have been collected and analysed since 1989, but care.data proposed an expansion of this database to include GPs. Critics argued NHS England failed to communicate the purpose of the scheme.Care.data was plagued by delays and controversies throughout its ill-fated existence. It was paused three times before eventually starting as a small-scale trial in four areas in June 2015, only for health secretary Jeremy Hunt to pause it again while Caldicott's review took place. While the review didn't look into care.data specifically, its recommendations around proposed consent and opt-out models effectively killed-off the project.
Commenting on the report's findings, Professor Sheila Bird at Strathclyde University’s Department of Mathematics and Statistics said: "Data-sharing as proposed by care.data was disastrously incompetent – both ethically and technically. Professionals rebelled and prevailed in outcasting care.data, thereby ensuring that future proposals will not succeed unless both technically proficient and in the public interest."
Lots more here:
The discussion paper on the 5th of October will be very interesting indeed and needs to be carefully considered.