Consensual, Safe and Transparent Sharing of Medical Records Along Care Pathways

medConfidential notes the various calls for medical records for patients’ direct care to flow with patients along care pathways as a priority, following consent for treatment – and the new (or pending) legal requirement that the NHS number be the mandatory identifier.

Both of these are generating some levels of patient concern. However both can be implemented in a manner which enhances trust, rather than risking it further.

Reporting to HSCIC that a particular NHS number has entered an organisation for care, and whether this was via a ‘handover’ of electronic records or through some other means (e.g. non-electronic referral, for example from A&E – or if there was some form of electronic handover failure) would begin to assuage a range of concerns. HSCIC could also then publish aggregated statistics for each pair of providers, to show how the different types of record handoffs (successful, failed, or other-manual) had worked, with the aim of increasing successful handling of electronic records for direct care along a pathway.

For providers receiving data on a care pathway, a figure could be provided of the number or percentage of patients who had refused consent for their medical records to be handed across electronically to/from that provider, but who consented to care. There will be a range of issues around this, e.g. Mental Health records being restricted – and where there are ‘outliers’ for a particular provider or flow (either due to technical issues, or because of consent choices) these will need to be addressed through a transparent process.

For patients, HSCIC should then be able to report to each person individually, via their Personalised Data Usage Report, everywhere their NHS number (and associated data) has been passed. As patients can learn exactly what does happen to their records, and why – and that it is the norm for this to happen without incident – this will contribute to a tendency towards increasing trust around the handling of records.

This process should be systematic, automatic, accurate and, over time, complete.

Additionally, as the expectation becomes that records do flow, patients will be able to see where this flow hasn’t happened (in addition to potentially experiencing the effects) and can raise questions – which is entirely appropriate if, as is asserted, sharing of medical records along a care pathway for direct care will improve outcomes. It is far more important to patient care and safety to know and correct flows for direct care where they aren’t happening as they should, as it is to know the data and flows for secondary use.

We emphasise the distinction between direct care – in effect, data sharing with implied consent between medical professionals who interact with and provide treatment to a patient – and secondary uses, which cannot presume consent, and for which patients have a right to opt out.

To illustrate this with a recent example; there are very few reasons to dispute or object to medical records being used for direct (“integrated”) care in, say, a meeting held between and run by medical professionals with a duty of care for a particular patient with complex needs, to devise a specific care plan for that patient. But a secondary use of that same information would be a meeting run by an accountant looking ways to manage the impact of a “high cost” individual.

It is entirely up to the system to transparently describe and discuss the difference, and it is the public knowledge that this will be examined which helps keep the system honest. And therefore trustworthy.