The NHS’s Care.data scheme may face more delays due to concerns over lack of publicity and clarity of the proposed programme.
Although the project has received positive support from patients, the public was not properly consulted on the scheme, a report has found.
The report, released by the All Party Parliamentary Group for Patient and Public Involvement in Health and Social Care and the Patients Association, detailed findings of an enquiry into the Care.data scheme.
“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, chief executive of the Patients Association.
“Patients and the public are broadly supportive of the principle of using health data for research that is in the public interest. However, many people still have deep concerns about the programme and are worried about how their personal data will be used.”
The need for open consultation on datasets, the necessity of an opt-out system, and the need for penalties for data misuse were also highlighted.
There are still many concerns over anonymity of patient data, as well as whether patient data will be sold to other organisations after a patient’s death.
Failure to communicate
The care.data scheme was put on hold for six months in February 2014 to further develop plans on how to explain and implement the scheme.
Many pointed to lack of communication and proper explanation on how data will be used and was to blamed for the public reception and subsequent pushback.
More on care.data
At a health committee meeting to discuss the Care.data debate in February, MPs accused Tim Kelsey, national director of patients for NHS England, of scaremongering after he said the NHS would not exist for much longer if 90% of patients decided to opt out of the scheme.
Concerns over data
The All Party Parliamentary Groups (APPG) report and public response to the plans show that data protection is at the forefront of people’s minds when it comes to the Care.data programme.
One of the biggest concerns is whether anonymised data, which will be sold to external organisations to recognise health patterns in particular data sets, could be interpreted to find the original patient’s name and details.
The public is also worried data may be shared with other government organisations for other purposes.
In February 2014, Sharmila Nebhrajani, chief executive, Association of Medical Research Charities, told a health committee meeting: “The public is rightly worried they don’t know who can and who can’t use their data.”
Stewart Room, partner at law firm Field Fisher Waterhouse, told Computer Weekly in January it is essential that the data is properly anonymised and secured.