Nursing leaders have stressed the need to ensure patient data is safe and secure, following the publication of a report on the government’s controversial Care.data programme.
The major IT programme will enable GP records to be shared to aid health research, but the government was forced to put it on hold because of concerns about how the information would be used and a lack of consultation with the public.
“Many people still have deep concerns about the programme”
An inquiry by the All Party Parliamentary Group for Patient and Public Involvement in Health and Social Care, which is hosted by the Patients Association, has agreed the public was not adequately consulted in the early stages of the scheme.
However, the group found broad support for the principle of sharing health data to help improve services and patient care.
“Evidence taken from a cross-section of healthcare charities, royal colleges, the research community and NHS England all points to 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,” she said.
The group said the government was right to pause the scheme to allow for more consultation and for other issues to be resolved.
Some called for a scheme where patients would have to “opt in” for their data to be used but the inquiry concluded an opt-out system was necessary to ensure enough data to make the exercise worthwhile.
The Royal College of Nursing was among organisations that backed an opt-out system, as long as it was communicated clearly to the public.
“Many nursing professionals see the benefits of sharing more data in the health service”
RCN chief executive and general secretary Peter Carter said nurses understood the benefits of sharing information.
“It provides extremely valuable evidence for better understanding patients’ health needs and for planning care services,” he said.“
Many nursing professionals see the benefits of sharing more data in the health service,” he said. “Community nurses visiting patients at home would find it useful to be able to see the patient’s hospital and GP records so they received the most appropriate and personalised care.”
He said there was a strong case for using patient data for research, but added: “It’s crucial this data is handled properly and kept safe. Many patients have entirely understandable concerns that this hasn’t been happening.”
The Care.data programme is now set to be rolled out in stages to ensure patients know what is going on, how to opt out, and so the scheme can be tweaked along the way.