NHS Trusts that misuse patient records must be penalised, says Sowerby Commission report
Electronic health records are as essential to good care as the thermometer and the stethoscope, according to a report by the Sowerby Commission, led by Imperial College London.
Four out of five doctors surveyed said sharing electronic records among those responsible for a patient's treatment improves care and two out of three said it would enhance their ability to compare treatment with best practice.
But medical records are currently separated in siloes - hospital, GP and clinic - and there are technical and cultural barriers to sharing them, including a reluctance by doctors to give up control.
After a year long investigation, the Sowerby Commission, a group of experts established by the Institute of Global Health Innovation at Imperial College London with a grant from the Peter Sowerby Foundation, has concluded that there are major benefits to health from sharing records, first by ensuring all staff caring for a patient have access to details of their condition, medication and test results, and secondly to improve care for the whole population through audit and research - the results of which should be advertised to bolster public support.
But there are also risks. Creating population level databases of records such as care.data is essential to improve care but patient confidentiality must be vigorously protected and only NHS or accredited academic organisations should be given access to them. The greatest benefits are likely to come from local and regional schemes, the report says.
Measures should be introduced to ensure no one can be identified from NHS data viewed outside the NHS. Risks can never be wholly eliminated but people whose data is lost or irresponsibly used should be able to claim compensation through the NHS Litigation Authority and the Care Quality Commission (CQC) should maintain a mandatory public record of known data breaches, as is required by law in the US, the commission says.
In addition, NHS Trusts that cannot show evidence of extensive use of electronic records should be forced to pay higher insurance premiums, be marked down by the CQC and lose their training accreditation.
Professor the Lord Ara Darzi, Director of the Institute of Global Health Innovation at Imperial College London, said: "Better data is key to improving the quality of care. That is what the NHS is now attempting with the care.data project, gathering information from GP records and using it to work out where care is going wrong - and where it is going right. We need to do everything possible to protect individual's privacy, while explaining the good that sharing data can do for all patients. The development is vital to the future of the NHS and organisations that fail to live up to these high standards should be penalised and patients compensated."
Sir Thomas Hughes Hallett, Executive Chair of Imperial's Institute for Global Health Innovation and Chair of the Sowerby Commission, said: "We can see that great progress has been made in moving the NHS toward a paperless future. But experience from elsewhere in the world shows there is much more to be done to deliver the benefits from electronic health records to patients and help NHS staff deliver great care. Adopting the recommendations in this report would speed their adoption across the country."
The introduction of electronic health records is transforming the medical landscape by giving patients and doctors instant access to their medical history, improving the safety of care, reducing errors and boosting medical research.
- In Scotland the Diabetes Collaboration Database, used to help manage the care of 288,000 patients, has led to a 40 per cent fall in local amputation rates, a 40 per cent increase in screening for diabetic retinopathy (a cause of blindness) and a reduction in foot ulcers.
- In Salford, alerts for diabetes patients have seen reductions in foot ulcers and amputations and an increase in retinopathy screening
- In Birmingham University Hospital, electronic prescribing data showed only 30-40 per cent of patients received antibiotics within agreed time limits. When this was fed back to staff, the proportion rose to 90 per cent, reducing their length of time in hospital
- In Lanarkshire, introduction of the Summary Care Record saved 23 patients from medication errors such as missed doses, and administration of contra-indicated medicines. By November 2013 there were 31 million Summary Care Records covering half the population of England providing vital information about a patient's medical conditions, drugs and history.
Jeremy Hunt, the health secretary, has pledged that all patients will have online access to their GP records by 2015. The commission goes further saying patients must be given a legal right of access to their electronic records, in common with their existing right to their paper records, and should be allowed to interact with, download and share their record as they choose.
Giving patients a right of access is essential to ensure the records are up to date and accurate and to allow them to book appointments, order prescriptions and become more engaged in their care.
The report says:
- Good records are essential to good care
- They must be available to everyone treating the patient
- Patients must have access to their own records, to ensure they are up to date and accurate (and to allow them to book appointments, order scrips, and get more involved)
- They must be available for research to improve care, with appropriate safeguards to ensure confidentiality and respect for public opinion
- Records should be integrated across health and social care to ensure a seamless service, especially for the rising numbers with chronic conditions cared for by multiple services that need co-ordinating.