Patients should have greater access to their NHS record, including checking their position on waiting lists and removing themselves, a Government review has suggested.
The review also recommended that patients are able to access their data through the Shared Care Record and add information about their own health and wellbeing.
Former health secretary and Government adviser Patricia Hewitt was commissioned to produce an independent review of England’s new integrated care systems (ICSs) in November, with the Government now considering its findings.
Her report, published earlier this month, includes multiple recommendations on data usage and sharing, saying ICSs and NHS England ‘need to work together to create a single view of population and personal health’.
The review also urged the Government to convene a national partnership group to develop a new framework for GP primary care contracts, based on the assessment that current ‘national contracts’ present a ‘significant barrier’ to local innovation.
The Shared Care Record (ShCR), which is a way of bringing together a patient’s separate records from different organisations, is now established in all ICSs and ‘should be a priority for further development’, according to the Hewitt Review.
Ms Hewitt said: ‘As soon as possible, the ShCR should enable individuals (and their carers where appropriate) to access as much as possible of their own data and allow them to add information about their own health and wellbeing.’
She adds: ‘As part of the development of shared care records and EPRs, patients should be able to access their hospital as well as their GP record, for instance updating information held on the NHS Spine, checking where they are on an elective waiting list and removing themselves if they have already had their diagnostic test or procedure and so on.’
Last year, a Government white paper confirmed plans were ‘underway’ to enable patients to access and edit their shared care records, and reaffirmed the goal of having shared care records for all citizens by 2024.
Dr Neil Bhatia, a GP and records access lead at his practice in Hampshire, said patients should have access to the individual ‘components’ of the Shared Care Record rather than automatic access to the entire database.
He said: ‘I have no issue with patients having access to their information – I’ve promoted that for 20 years. But it has to be individual organisations taking responsibility for determining what information the patients sees.
‘I don’t want to limit what I provide to a Shared Care Record because that would reduce the effectiveness of that record.’
Dr Bhatia expressed concerns about patients having access to all the data in the ShCR because there may be sensitive information that is intended only to be shared between clinicians.
He also disagreed with the recommendation for patients to add information themselves or remove themselves from hospital waitlists: ‘As a rule of thumb I don’t think patients should be able to add information about their health and wellbeing to any record.
‘I think they should be able to send us that information, then we decide whether that’s relevant and we act on it. If they start sticking information in their record, somebody’s got to be responsible for looking at that.’
Sam Smith, policy lead at medConfidential, a campaign group for confidentiality and consent in health and social care, said patients have to know ‘what the data contains if they are to make informed decisions about the use of that data’.
He said: ‘Telling patients that they only get to see the bit of their record that has been copied into an optional Shared Care Record is fine, but it does nothing for most people who don’t even know they have a shared care record, because no one ever told them.’
The recent GP contract imposition for 2023/24 stipulated that GP practices need to offer automatic access to prospective patient records via the NHS App by 31 October 2023.