Introducing the technology to make Caldicott’s “duty to share” a reality is an imperative for the NHS, says Shaun O’Hanlon. He outlines the rewards and pitfalls of data sharing across the service
Integrated care through record sharing among different clinicians must happen if the NHS is to continue to provide an efficient, high quality service to patients, and fulfil its ‘connect all’ mantra.
Earlier this year, the Caldicott2 review gave clinicians a new ‘duty to share’ data when it is in the best interests of the patient. The recommendations, now formally adopted by the NHS, turn record-sharing on its head. Rather than being a privilege for patients where the technology is in place, it will now be a right.
This year has also seen a major change of government IT policy with the procurement for the renewed GP Systems of Choice framework requiring suppliers to ensure their systems are fully interoperable to enable seamless data-sharing with other healthcare professionals.
This month (September) the data-sharing juggernaut gathered speed when Jeremy Hunt proposed radical changes to the GP contract. From 2014, he wants named GPs to be in charge of coordinating 24/7 care for elderly patients across all areas - primary, social and acute.
The detail has still to be worked out, but the health secretary knows it cannot happen without widespread data sharing – and so by the end of 2014 he wants at least one-third of A&Es to be able to see patients’ GP records, and at least one-third of NHS 111 services to see callers’ GP records. The drive towards joined up care is now unstoppable.
But the challenge isn’t developing the data-sharing technology – it already exists – it is persuading NHS trusts, CCGs, clinicians and patients to use it. As Caldicott2 says, better education is needed on the overwhelming advantages of record sharing, and exactly what it means in terms of responsibilities and patient confidentiality.
Which patients benefit?
Every patient in the NHS will benefit from secure data sharing, particularly the huge number of elderly people suffering from long-term conditions.
Consider the case of an elderly man, living alone, and suffering from Chronic Obstructive Pulmonary Disease (which affects over 830,000 people in the UK). Its course is unpredictable and patients can easily take a turn for the worse, especially in cold weather or when they forget to take their medication. When our lone elderly man gets ill, it’s usually at night and he is likely to be seen by out of hours doctors who do not have access to his medical history, a list of his current drugs or his health and social care plan. Frequently this results in his being taken to A&E and admitted to a ward for observation as a precautionary measure.
Yet, rather than a hospital admission, the care plan could have measures in place to offer him intensive support from a local nursing home during a short ‘respite’ stay, or care in a ‘virtual ward’ at home with a community matron, supported by a named relative. Once in hospital, our patient is likely to get stuck there, and he is also at high risk of secondary infection. If he stays too long, his social care package at home might very well disappear, as scarce resources are diverted elsewhere. He then becomes a ‘bed blocker’. Record sharing could eliminate this scenario, and steer him and thousands of others away from high risk, expensive hospital stays and to more appropriate, safer care at or close to home.
At risk children – a ‘no brainer’
Child protection is another key area where synchronised, secure record sharing is a ‘no brainer’. By 2015, all A&E clinicians should be able to see whether children attending the department are ‘at risk’ via a national database. But to function as it should, the national register needs to be seamlessly integrated into the IT systems of everyone who cares for children, from social workers to health visitors, midwives and GPs. They should get an automatic alert every time a vulnerable child presents, so that care is fully informed.
Complete picture of vulnerable children
More than 250 professionals across 10 child and adolescent mental health services teams under the Greater Glasgow and Clyde Health Board are now providing “joined up” psychiatric care to more than 5,000 children and teenagers in a record sharing project that is set to stop “at risk” children falling through the care net. They now have a shared view of each other’s concerns from within a single electronic record and are able to contribute to a multidisciplinary chronology of ‘significant events’, building up a complete picture of care. Programme lead Karen McFadden says: “We believe this will help us to identify and protect vulnerable children through improved information sharing across professionals. Where we suspect a child protection issue, we can call up information from the single shared record, hugely speeding up our response.”
What technology works?
Different data-sharing options will suit different CCGs and regions. Data sharing among different clinicians using the same system can be attractive but the complexity of the health service demands that different systems used by different professionals talk to each other. This enables not only data sharing but seamless sharing of tasks and alerts across different care environments, with everyone accessing transactional services such as appointment booking.
In a major step forward for data sharing, all of the major GP system suppliers recently agreed to share data via an established interoperability gateway. GPs will be able to share (with patients’ permission) information with the rest of the NHS, including other community providers and secondary and urgent care clinicians.
So what are the barriers to data sharing?
GPs are rightly wary of sharing patient data without proper safeguards, and take their responsibilities as data controllers under the Data Protection Act (DPA) very seriously. However, the DPA is not exhaustive on the GP’s legal position should there be a breach of a patient’s confidentiality by a data processor: the Information Commissioners Office has published guidance on data-sharing agreements to augment the DPA. The GPs’ role as data controller needs to be aligned with their duty of care and their duty to share.
Now that the government has said it will adopt all the Caldicott review’s recommendations, the NHS has clear direction to enable sharing where a patient consents and the record viewer has a legitimate relationship with the patient. Professional bodies, exemplar pathfinders, IT suppliers, CCGs and trusts must find a way of resolving the information governance and data protection challenges.
All the evidence shows that the vast majority of patients themselves are surprised that their data is not already being shared. The only question remaining is how best to manage patient consent and confidentiality – in my experience, obtaining the patient’s consent to sharing specific, relevant data at each episode of care and for each professional involved is the most robust and scalable method. For example, an unscheduled care doctor needs to see a different subset of data from the GP record than that which the GP needs from a social services record. Point of care consent gives patients the right not to share certain data, as well as reassurance about the extent and confidentiality of the data that they do share.
Existing healthcare systems can supply all the tools that local health economies need to make integrated care through data sharing a reality across all areas of the NHS and beyond. All that we need now are robust data-sharing models to reassure patients and clinicians alike. Widespread data sharing will enable safer, more efficient care and drive up standards across the NHS. What is there to lose?
This article was written by Dr Shaun O'Hanlon.
The original article can be read on HSJ. You can also follow Shaun on Twitter.