NHS England’s controversial data-harvesting programme dubbed Care.data could face further delays after an inquiry into the scheme found that there has been a lack of clarity about the project.
In February, NHS England responded to rising criticism over its plans for a centralised patient record database by postponing the programme for six months, and in May, the organisation’s chief executive Simon Stevens told MPs that the programme’s “artificial start date” should not be set in stone – suggesting that further delays were imminent.
Now, a report released by the All Party Parliamentary Group (APPG) for Patient and Public Involvement in Health and Social Care has found that the public still has concerns about how their data will be used.
NHS England hasn’t yet announced when it expects to release the list of GP practices that will pilot its flagship Care.data project, although it has said that surgeries in the Clinical Commissioning Group (CCG) areas of Leeds, Somerset, West Hampshire and Blackburn with Darwen would be selected.
But the parliamentary group’s report will come as a blow to the organisation, after it questioned the project’s aims and methods.
“There has been a lack of clarity and publicity around the Care.data programme, how the data will be used, who the data will be used by, and what implications it has for end of life care,” the report stated.
Unsurprisingly, evidence taken from a cross-section of healthcare charities, royal colleges, the research community and NHS England showed “strong support for medical data sharing in theory”.
The report claimed that patients and the public “are broadly supportive of the principle of using health data for research that is in the public interest”.
But it added that many people still have “deep concerns” about the programme, and are particularly worried about how their personal data will be used.
It said that most participants agreed that an opt-out system is necessary to ensure that researchers have large enough datasets that are representative of the population as a whole – a point that privacy campaigners have strongly disagreed with.
But despite the NHS’s £1m Care.data leaflet scheme, it said that the public had been “inadequately consulted in the early stages of the Care.data programme”.
“It would therefore be correct to halt the programme to allow further consultation,” it said.
It also noted that information regarding legal penalties imposed on individuals or organisations that abuse patient data needed to be resolved.
The APPG said it would discuss the progress of the Care.data programme at a meeting in 2015. If necessary, NHS England’s Care.data team will be asked to report on how the programme has progressed.