Campaigners cry foul over NHS Digital plans to grant policy wonks and researchers access to patient-level data | 3/22/2019 | Staff
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"Rich" and "granular" patient data from hospital and GP records could be shared with policymakers and researchers under new plans from NHS Digital.

Campaigners have criticised the move, which would see far more detailed information shared higher up the health and social care food chain, warning it has echoes of the scrapped scheme.

Changes - Consultation - Responses - February - End

They also claimed that the changes, outlined in a consultation opened for responses in February and due to close at the end of the month, have been "buried" and won't have received enough scrutiny.

The consultation on the Clinical Information Standard Specification is linked to health secretary Matt Hancock's "tech vision". NHS Digital said the aim was to set out "what better, standardised coding could allow us to achieve in the future".

Disparate - Systems - NHS - Patient - Care

Standardising the disparate coding systems in the NHS could improve patient care and population health, reduce the risk of harm related to information errors, boost R&D, and help direct funding, the document said.

However, the move would mean recording unprecedented levels of detailed patient information centrally and possibly sharing raw data with researchers or policymakers – this flow is set out in a diagram in the consultation document.

Aim - Flow - Information - Focus - Medium

The broad aim is to create an "end-to-end flow of patient information" with a "significant focus" in the medium term being to provide "increased granularity to secondary uses flows", such as commissioning, funding, policymaking and research.

This will involve developing a national system that will "begin to transition toward landing raw... data rather than post-transformed data".

Heart - Push - Adoption - SNOMED - Coding

At its heart is a push for widespread adoption of SNOMED, a coding system used by clinicians to record symptoms, family history, observations, diagnoses and more. It is already used in primary care. Secondary care, community systems and dental care are required to implement it by 1 April 2020.

The prospect that this "rich clinical detail", as NHS Digital...
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