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.
And at the start of February, all practices using SystmOne saw automatic access to prospective patient records via the NHS App switched on unless they had opted out.
READERS' COMMENTS [6]
Please note, only GPs are permitted to add comments to articles
We are one step away from GP records being curated by patients, and as a result of this being as objective and useful as instagram and tinder profiles.
maybe GPs could add their daily status around health and wellbeing to a record for the Health Secretary to look at?
Yesterday a patient walked into ED demanded to be seen by a dermatologist. She checked on her NHS app that a referral made by her GP to dermatology got rejected. She was admitted and is yet to see a dermatologist. NHS is paying approx £500 daily for her bed. She has been referred due to eczema.
My clinical notes have (for 20 years or so) been wholly objective and accurate records of my patient encounters. They are so as a matter of professional pride. This ain’t gonna change. They are for my use, and for the use of colleagues who want to get rapidly up to speed on the person in front of them (since continuity of care has gone, this is essential). If any third party (the patient) wants to take issue with that (other than matters of fact) I’ll defend my notes as far as the GMC. What I wrote prior to 20 years ago is known only to the shredder.
Further illogicality and errors in thought and of understanding of what a clinical record is and who it belongs to.
The ‘physical’ record is the property of the physician, whether it be paper based or IT. It is a personal record of an individual physician’s thoughts, interpretations, and outcome of a medical consultation.
The content of the record is also the property of the physician but the patient is legally entitled to access the information and have copies of either part of or the entirety of the chart
No-one has the automatic right to alter anyone else’s property.
If a patient requests a copy of any medical record entry, they should be given it. If they wish to amend or add comments to their own copy that would be their right – but they do not have the right, and should not be allowed, to alter or add to another person’s documentation.
And who takes responsibility when a patient removes themselves from a hospital waiting list then it all goes badly wrong. The patient will claim they didn’t know how important the referral was. How do GP’s know the patient has removed themselves? I can see more vast work for GP’s constantly re referring patients who thought they knew better