NHS England has published an ADHD data improvement plan, with a roadmap setting out planned actions to improve data quality and introduce regular reporting. “We know our ADHD service provision has not kept pace with demand and there is a need to improve access, experience and outcomes,” the plan states, outlining the importance of accurate data in helping understand patient experience, enable service improvement, and support work on tackling health inequalities.
Highlighting that one of the challenges identified by initial work to understand issues facing ADHD service provision was the lack of reliable data, NHSE points to a long-term vision to have accurate national data on aspects of ADHD pathways from referral to outcomes, adding: “We want this data to be linkable, consistently defined and of low burden for providers to collect.”
In light of this aim, NHSE intends to make better use of existing data by publishing data currently held at provider level, with the hopes of encouraging providers to improve the data submitted, as well as issuing technical guidance on what data should be recorded, data completeness and quality to be implemented by no later than autumn 2025.
The focus for the remainder of 2025 will be on creating this guidance and further work around making better use of data, including linking data sets and exploring where gaps in the data exist. Reporting on the number of people waiting for an ADHD assessment, with a coded diagnosis of ADHD, and prevalence will begin in May 2025, whilst NHSE looks to begin the reporting of re-referrals, number of assessments undertaken, and diagnosis rates from autumn. Reporting is expected to be expanded to look at understanding co-morbidities in people with ADHD from 2026, with NHSE currently looking at options to retrieve this data.
Technical guidance will target existing national datasets, with the Community Services Data Set, Mental Health Services Data Set, and e-Referral Service Data Set being prioritised for the time being. The technical guidance will be published in June 2025 on the Neurodevelopmental data hub, with monthly reviews to measure implementation set to begin in August. Work will start on new ADHD official statistics in December, whilst draft ADHD official statistics and governance work is expected around February 2026.
Wider trend: Data sharing, quality, accuracy, and more
The HTN AI and Data Awards 2025 celebrated some of the innovative projects and work underway across the health and care system across four competitive categories covering the use of AI and data in diagnosis, treatment, communication, system efficiency, and more.
A HTN Now panel discussion at the beginning of the year saw HTN joined by a panel of experts from across the health sector to discuss how general practice, PCNs, and ICBs can utilise data and leverage technology to support operational efficiencies and improvements across primary care. Panellists included Kathryn Salt, assistant director of primary & community care, data and analytics for the Transformation Directorate, NHS England; Dr Shanker Vijayadeva, GP lead, digital transformation for the London region at NHS England; Dr Sheikh Mateen Ellahi, GP and practice partner at ELM Tree Surgery and South Stockton Primary Care Network; and Max Gattlin, digital consultant at X-on Health.
NHS Gloucestershire has published its first draft ICS data strategy spanning 2025-2030, pending approval from the board, marking a “bold step forward” in drawing on system strengths and transforming how data is used to improve health and care outcomes in Gloucestershire. It focuses on improving citizen-facing care, workforce empowerment, transparency, and innovation, overcoming identified issues around limited or inconsistent access to data for both staff and patients, and overcoming siloes of data to effectively respond to system pressures, monitor performance, and plan strategically for future needs.
