Information on mental health, sexual health and infections should be excluded from the initial summary record on the spine, Connecting for Health (CfH) clinical leads have recommended.
The proposal is included in a major discussion document and marks a significant change in emphasis on plans for the NHS Care Record Service (NCRS). It follows continued and widespread concern among both patients and clinicians that the NCRS could lead to breaches in the confidentiality of potentially sensitive information.
The document, prepared by GP clinical leads Dr Gillian Braunold and Professor Mike Pringle has received the backing of Connecting for Health and its Care Record Development Board.
It is now out for consultation with the aim that comments can be taken back to the next CRDB meeting on 28 July to formulate a more formal policy on the initial content of the summary record.
Professor Mike Pringle, joint GP clinical lead for Connecting for Health and a GP in Nottingham, told E-Health Insider that the document was designed to outline how the NCRS could be made to work for patients and clinicians on the ground.
He added: “We looked at what we felt we needed to put in to ensure patient confidence and safety while meeting the requirements of patients and clinicians and the Care Record Guarantee.
“What we are suggesting and what we want to discuss with people is that the initial summary record does not include diagnoses in three of the problem areas, that is sexual health, infections and mental health.”
The document says there are two records that will make up the NCRS, the Patient Clinical Record and the National Summary Record. The National Summary Record will provide information for first contact care such as that provided to temporary residents or in A&E departments.
The document says the summary record will begin by including major diagnoses and procedures together with current prescriptions and allergies, excluding potentially sensitive mental health diagnoses, sexual health episodes or infections.
Professor Pringle said that even though this would mean the summary record was not complete it would be invaluable to health professionals such as those working in A&E.
He added: “Anything is better than the current position and as the record becomes richer and people trust it more and more it will build up and become more complete and more useful. I think it will be an incremental process”
The document says that once a patient’s National Summary Record is in place it will be added to with:
• all electronic prescribing records from all settings
• significant diagnoses, procedures and allergies that the patient and clinician agree should go on the summary record
• clinical documents such as referral letters and discharge summaries
• patient comments, preferences and views such as statements on living wills, added via Healthspace
The document states that patients could choose not to have some of their prescriptions on the summary record such as prescriptions in connection with mental health treatment. A separate working group is reporting separately on this issue.
Prof Pringle said the summary record on the spine would be initially populated from GP records as practices joined the NHS Care Record Service. He predicted that practices would join the NCRS from this time next year if they had a spine compliant system and their database had been validated as being suitably accurate and complete.
He added: “At that point a patient awareness campaign would be conducted so that patients knew this would happen and patients who said they did not want to have a summary record would not need to do so.”
Prof Pringle said that in such cases GPs could continue to record information on their existing local computer systems as before.
As well as the summary record the document aims to explain how the Patient Clinical Record might work.
It says most people will be receiving care from a range of health professionals such as their GP, an optician, a pharmacist, a community nurse, a dentist and a consultant in outpatients.
It adds: “The records of those health professionals involved in on-going care for a patient will collectively comprise that patient’s Patient Clinical Record. This is independent of where those health professionals are geographically located or where their records are stored.”
The document says that health professionals will have access to their own records and aspects of the other parts of the Patient Clinical Record as determined by their role based access.
It says access will be by implied consent where a patient is referred by a GP to a specialist but by explicit consent where a patient approaches a health professional without a referral, for example if a patient wants their optician to have access to part of their Patient Clinical Record because they have diabetes.
A third group of patients with complex or multiple health conditions will additionally have a “pathway of care” where health professionals involved in their care can access and contribute to a shared record.
The document says it is central to the vision on the NCRS that patients can limit the information that is included in their Patient Clinical Record.
It adds: “A patient can decide not to allow access to their Patient Clinical Record to any health professionals involved in their care. In further developments of the Patient Clinical record patients will be able to request that specific clinical items in their record are not available to specific individual health professionals or groups.”
Dr Gillian Braunold, who shares the GP clinical lead role with Professor Pringle, said deciding what information should go on the NCRS was something that the profession and patients had to do together.
She told E-Health Insider: “What we are suggesting is a way forward that we think has credibility but we’d like the profession and patients’ views on it.”
Consultation on the paper is open until 20 July and a final version is due to be published on 31 July. Click here to view the paper.