Alison Taylor, Senior Programme Manager, Digitising Social Care, NHS England and Adam Milward, CEO, MetaDataWorks discuss the Adult Social Care Terminology Project and its implications on the digitalisation of Adult Social Care
Joseph and his Amazing Technicolour Dreamcoat
This July, my (Adam’s) daughter will be taking up a starring role - chorus member, group three - in a production of Joseph and the Amazing Technicolour Dreamcoat at her school. Ahead of the production, each child in the school is to bring in a brightly coloured piece of fabric which will ultimately be sewn together by what we can only imagine to be an extremely patient team of teachers.
My daughter goes to a small village school. There are between 60 and 70 children bringing in a piece of fabric. Each child has been provided with the required dimensions of the fabric, a designated colour, and some guidelines (‘nothing too thick, patterned is fine but stick to your one colour’). I overheard another parent asking the teacher at pick up why they had bothered putting these rules in place– her son’s favourite colour is green, but he was designated as a blue fabric bringer. She replied something along the lines of, ‘If we don’t know what everyone else is doing, we’re going to end up in a mess. This way, it’ll be much easier for us to knit the pieces together, making sure it’s a useable shape and includes all the right colours.’
The threat of an all green 45 meter long ‘dream coat’ struck a chord with me, and though it certainly pails in significance and scale when compared to the importance of digitising Adult Social Care, the teacher’s words certainly ring true for us as we look to fast track the digitalisation of Adult Social Care.
The scale of the challenge
In England alone there are around 18,500 organisations providing or organising adult social care across approximately 40,000 establishments including residential homes, home care agencies, and day centres. These organisations rely more and more on healthcare data to improve decisions making and support in how best to personalise the care for the individuals they support. Healthcare systems are continuously creating and recording new data as they document patient details, medical treatments and outcomes. Clearly then, the data within the Adult Social Care sector has the power to unlock valuable insights for researchers, empower evidence-based decision-making for clinicians and other health and social care professionals, optimising the delivery of care.
However, in much the same way as the squares of Joseph’s coat, if handled in silo without group guidance, potentially rich data can be very difficult to use. A lack of data sharing and collaboration between adult social care providers contributes to higher costs, a lack of visibility and an inability to provide truly joined up care – or 45 irregularly shaped pieces of exclusively green fabric – not a great base for a dream coat.
Data users and ‘inputters’ within the adult social care sector are very rarely data professionals and are highly unlikely to have time and budget to spare to liaise with the thousands of other care organisations to make sure their data is interoperable - or rather, can easily be combined with the data from other providers and people to improve outcomes for all.
The Adult Social Care Terminology (ASCT) Project, commissioned in March 2022, is a pivotal component of the Digitising Social Care (DiSC) programme. Funded by the Department of Health and Social Care (DHSC) and delivered by a joint DHSC/NHS England team, DiSC aims to transform adult social care through digital innovation.
In layman’s terms, ASCT was commissioned to fast-track digital transformation across adult social care with the aim of improving efficiency, safety and personalisation and ultimately improving patient care.
How?
To facilitate this aim, MetadataWorks was initially brought onboard to:
So, what have we done so far?
In the first instance the Adult Social Care Data Catalogue was developed as the foundation of the project.The catalogue is now a national “home” for adult social care data standards. A place where new and existing standards can be consolidated and published, and the community can discover and contribute to data best practice. This helps to streamline data collection, improve interoperability, and reduce duplication. The tool enables better data sharing across health and adult social care, improving the experience for the person receiving care and support as well as reduced burden for adult social care providers with improved access to information needed at the point of care. Currently, 17 terminologies, 14 data standards and 56 data specifications, covering 12,364 individual elements have been published through the platform. With more than 1400 active users of the system in 2024, this UK-first is becoming the go-to platform for adult social care data standards.
Alongside the data catalogue, a glossary was produced to identify a range of terms and definitions, to clarify the existing use of language, and to help identify any inconsistencies and inaccuracies. Currently there are 405 key terms listed, helping users establish a common language and understanding for adult social care records.
Next, the Minimum Operational Data Standard (MODS) was created and published as an ISN in April 24. April 25 MODS was published on the DSCR roadmap for assured DSCR supplier to assure against by July 26. This is to ensure a consistent baseline recording of direct care data by adult social care providers, using an assured DSCR solution supplier. This enables interoperability and ensures the data recorded in every instance remains consistent and supports the delivery of improving quality care outcomes as well as facilitating potential research projects.
More recently, the Draft Reporting Minimum Data Specification (RMDS), a provider-level reporting specification for Digital Social Care Records has been introduced to aid consistency and clearly illustrate how a common data collection strategy could reduce burden for adult social care providers, encouraging the providers to adopt the standards.
Finally, we have introduced an Assurance Portal - an online platform to allow DSCR assured suppliers to assure themselves against MODS, making it auditable, easier and less time consuming for all. The development of the portal included the creation of a Gap Analysis document which helps us to understand how we can improve the MODS, with real time insights from the health and adult social care community – we’re always looking to improve our tools to serve both people and adult social care providers.
What’s Next?
A great deal has been achieved in recent years, undeniably accelerating the digitisation of the Adult Social Care sector. The groundwork laid has been transformational — but progress shouldn’t stand still. With the Adult Social Care Interoperability Platform (SCIP) in development, the next phase is underway.
However, as with any new standard, its true value is only realised when it’s tested, refined, and implemented for adoption in real-world settings. Standards must evolve alongside the needs of the community they serve. Simply publishing them isn’t enough — implementation, adoption and use is the measure of success.
Now is the time to focus on helping the sector understand, implement, and embed these standards into practice. This means providing support, gathering feedback, and remaining responsive to change. Implementation is not the end of the journey — it’s where the real work begins.
Want to hear more?
To learn more about the work we have laid out above, feel free to reach out to the MetadataWorks team by booking a call with one of our experts or reach out to england.dscrroadmap@nhs.net for further information.