An all-party parliamentary group (APPG) on patient and public involvement in health and social care, chaired by the Patients Association, has been gathering evidence and assessing public and patient concerns about the ‘care.data’ programme throughout 2014. The group uncovered concerns about the proposed operation of the scheme and the uses to which gathered data would be put, but found that the public tended to support sharing of data for medical research that was in the public interest.
“Evidence taken from a cross-section of healthcare charities, royal colleges, the research community and NHS England all points towards strong support for medical data sharing in theory,” said Katherine Murphy, the chief executive of the Patients Association. “However, many people still have deep concerns about the programme and are worried about how their personal data will be used.”
Laura Cockram, campaigns manager at Parkinson’s UK, said that patient data records were “essential” for research into Parkinson’s disease and the development of new treatments and improved services for patients. “However, it is important that the public feel secure about how their data is being used and are made aware of who has access to it,” she said.
The care.data programme was due to begin in April, but its implementation was postponed in February following concerns about patient awareness of the scheme and their consent to the use of their health data. The new care.data database will combine certain patient data newly gathered from GP surgeries in England with that already collected by hospitals unless individuals opt out. A new Health and Social Care Information Centre (HSCIC), established under the 2012 Health and Social Care Act, will manage the data as well as authorising third parties to access it for certain purposes and under certain circumstances, including for medical research.
NHS England has said that the programme will be used for the benefit of patients; including by allowing it to monitor standards of care and clinical safety in different areas, and in cases where people with long-term conditions are being treated away from hospital. The database will also be used to support research into new medicines and the treatment of disease, it has said.
In its report, the APPG said that the government was right to postpone the scheme, which will now be trialled by between 100 and 500 GP surgeries in four ‘pathfinder’ areas ahead of its national launch. However, it said that concerns remained about the scheme and that all respondents to its enquiry had criticised the “inadequate” public consultation in the programme’s early stages. The phased roll out has been designed to ensure that GPs are able to pass on to patients the purposes of the data collection, its safeguards and how they can opt out of the scheme, according to NHS England.
The APPG has backed an ‘opt-out’ system, under which healthcare data will be collected from individuals automatically unless they say otherwise, rather than the ‘opt-in’ system supported by some critics of the scheme. Opt-out is needed in order to “ensure that researchers have large enough datasets – which are representative of the population as a whole – to make the scheme worthwhile”, it said. It has recommended further “open consultation” on what data should be included to ensure that it covers the most common diseases seen in general practice.
Professor John Williams, director of the ‘health informatics’ unit at the Royal College of Physicians (RCP), said that the body was strongly in favour of “presumed” consent requiring patients to “actively ‘opt-out’ should they not wish any of their data to be shared”.
“An ‘opt in’ approach based on active consent would render the scheme inoperable as this is likely to result in a low participation rate, which in turn will yield insufficient data to be able to draw meaningful conclusions that will bring benefits to future patients,” he said.
The APPG intends to “closely monitor” the implementation of the programme throughout the pathfinder stage, and will discuss progress at a future meeting in 2015, it said.