- Consultation documents reveal new information standards will be used to increase amount of patient-level data available for research and planning
- NHS will collect more “raw” patient data centrally to provide “increased granularity” for researchers and planners
- Comes as NHS Digital CEO warns confusion over health data sharing rules risks “almost irreparable damage” to patient trust
- NHS Digital says document is “not a statement of intent” but a description of what “we can potentially do with data”
The NHS is planning to collect unprecedented “granular” details about patients’ care nationwide and make that information available to researchers, HSJ can reveal.
The details are contained in an NHS Digital consultation document regarding new mandatory standards for clinical information, developed to support health and social care secretary Matt Hancock’s “tech vision”.
It stated: “Our vision is that… commissioners, researchers and public health planners can access clinical information… with the rich detail of the clinical encounters.”
The document outlined a “vision” that included improving the national collection of patient-level data across all care settings down to specific diagnosis, procedures, symptoms, family history, allergies and clinical observations.
The consultation documents said the two central aims were to improve the quality of information captured during care, through enforcement of standards, and to make that information available for secondary uses.
The document stated: “NHS Digital will consult with the research, population and public health communities to determine what flows would benefit from increased granularity of information.”
Data flow: How newly “rich detail of the clinical encounters” will be shared throughout the NHS and beyond, according to an NHS Digital document.
“Phase one” of the project would focus on improving and linking “granular” information about patients with other NHS data to support direct care.
But “phase two” and “phase three” will focus on “increasing the value” the wider NHS can “extract” from this more detailed patient-level data, including to support research and informing NHS funding decisions. The “raw” data would be collected centrally by NHS Digital, the designated data “safe haven” for the NHS patient data, which would modify its national IT systems to handle the flow of this more detailed patient data.
The document stated: “Phase two also focuses on developing the national reporting stage of the ecosystem where the national returns begin to transition toward landing raw… data rather than post-transformed data.
“This is a significant element of the vision, which will eventually provide the increased granularity to secondary uses flows and therefore positively impact patient outcomes through more informed commissioning, research and public health planning.”
While NHS Digital already collects and shares patient-level identifiable data centrally, particularly hospital data, what is proposed in the document would vastly extend the range and type of information collected and potentially shared.
This new system would be based on NHS-wide adoption of SNOMED CT – a “vocabulary” used worldwide for electronically recording highly-detailed clinical information about a patient in a standard format.
The use of SNOMED CT is already mandatory in primary care and all parts of the NHS are required to switch to the code by April 2020.
Responding to HSJ, an NHS Digital spokeswoman said the consultation document was “not a statement of intent, but a description of what better, standardised coding could allow us to achieve in the future”.
She added: “No new data will ever be collected or processed by NHS without going through rigorous, public processes to ensure that the collection has a clear legal basis and is proportionate in scope.”
The spokeswoman said that, under the proposed national system, patient data would be ”pseudonymised” before collection, would not be stored as a single data set and will only link data together for “pre-agreed purpose with a clear legal basis”.
The plan comes as NHS Digital’s chief executive Sarah Wilkinson warned ambiguous rules for using patient data in the NHS risked causing “deep and almost irreparable damage” to public trust.
Natalie Banner, lead at the Wellcome Trust’s Understanding Patient Data team, said the move towards more coherent and consistent coding of patient data was welcome and would support better care and planning.
However, the availability of more detailed patient information also gave rise to legitimate questions about how that information would be used and protected.
She said: “It is vitally important that patient, public and health professionals’ views, expectations and concerns are embedded into thinking about how data could be used for research and planning as these standards are developed – not as an afterthought.”
Phil Booth, coordinator of privacy campaign group medConfidential, said: “Using coded patient information for funding decisions by policy makers is toxic for public confidence in all uses of health data, and must be explicitly prohibited in law.”
The consultation on the IT standards closed on Wednesday.
The Department of Health and Social Care was approached for this story.
NHS Digital consultation document, comment provided to HSJ