As a patient, can you know how your medical records are used, and whether those uses are all consensual, safe, and transparent?

This is the current and publicly-proposed state of play, as of summer 2024. Large parts remain undelivered and late. Covid then changed some things, and the subsequent takeover of NHS Digital by NHS England, and the complete opacity of their Palantir Procurement means there is not enough information in the public domain (or even in secret) to meaningfully update it before (likely) summer 2024 or beyond

(N.B. This scorecard was first published in September 2017, following the Government’s response to Caldicott 3.)

medConfidential believes it is possible for every trustworthy organisation to meet the requirements of consensual, safe, and transparent.

It is still the case that, in practice, an individual institution or organisation may fall short of being consensual, safe, and/or transparent in any particular instance. This scorecard covers what the current rules intend to be the case.  Shared Care Records are being reused for secondary uses when the public were told this would not happen.

The scorecard above relates to patients’ data within the boundary we define as ‘being under NHS data controllership’, which includes data processed under an NHS contract. This may, for example, exclude apps to which you provide data which were “signposted” by the NHS. For such apps, we have a page covering ‘The questions you should ask about apps’ (coming soon).

What the NHS terms “Risk Stratification” – activities such as the calling in for screening of people with particular characteristics – can be done in a number of ways. The scorecard considers such activities depending on where the decisions are taken: consensual and transparent risk stratification requires different types of decisions to be made at different levels, e.g. the CCG may choose the characteristics of whom should be called, but the GP should select their patients who actually meet those characteristics. (The transparency and accountability of such a model sometimes works against the narrower interests of some local decision makers, who do not wish to make a clear decision based on the best evidence.)

medConfidential strongly believes that there should be a single consent choice for patients – one tick box covering all secondary uses. However, ‘consensual’ covers any legal basis for consent, not just dissent – including exceptions provided for in law by Parliament, such as in the case of a public health emergency.

An acid test of what is ‘safe’ is: can you find a record and medical history based on reasonably-known information (e.g. available to neighbours, or from an article in a newspaper) and then successfully cover it up? It is insufficient for every member of the public to be expected to keep their children’s ages and dates of birth secret from their friends, classmates, and ex-husbands. The only truly safe way to handle patient-level data for secondary uses is in a fully-auditable Safe Setting, or by providing statistical outputs only.

Cancer Registry: Due to the conflation of direct care and secondary uses, the current data model for, e.g. the Cancer Registry, cannot deliver a true Caldicott Consent Choice to patients without a fundamental redesign that takes the law into account (even the law as it was when the current registry was built).