NHS and local authority patient and service user data has traditionally been collected and analysed in sector or organisational silos, making it difficult to gain a complete picture of care needs and service use across health and social care.
Arden & GEM has been working with the Department for Health and Social Care (DHSC) to address this by developing a new national system to collect and link social care data with health data, which is already helping to provide a holistic picture of patient journeys and support care planning.
The challenge
Linking of data across health and social care has been limited and inconsistent due to several barriers, including:
- Governance – including the legal basis for data collection for purposes beyond patient care, data sharing and patient opt-outs
- Data quality – including out-of-date, inaccurate or incomplete records
- Technical issues – including differences in data descriptors and IT systems and set up.
In 2015, DHSC set up a pilot with the North West DSCRO, operated by Arden & GEM, to work with three CCGs and local authorities in Manchester, Liverpool and Rochdale. Its purpose was to explore how the DSCRO could be the conduit to linking health and social care data.
Our approach
Working collaboratively with all partners involved in the pilot, we were able to understand and overcome these barriers to enable data integration. The legal basis for data processing was established and necessary legal documents, such as Data Provision Notices (DPNs), were put in place to address governance concerns.
We were able to help address data quality issues as they were highlighted through initial data sharing, and local systems were configured to create the necessary extracts against a standard specification to resolve technical barriers.
By the end of the pilot, the three local authorities were submitting client level data (CLD) and the centrally managed Data Landing Portal, hosted by NHS Digital, was identified as consistent submission mechanism that could validate submissions to improve data quality.
The pilot also raised awareness of potential benefits of data sharing. These included enabling CCGs to see more complete patient pathways and local authorities improving the accuracy of their client records.
Having demonstrated the success of working to a standardised specification and linking care data with health data locally, we moved on to a national solution.
The national programme
Building on learnings from the pilot, Arden & GEM became the lead DSCRO working with counterparts to support all regions of England in developing a national programme linking health and social care data, delivering the following:
- A reference group comprising social care leads from 21 local authorities, representing all regions in England, to agree a national specification which was published in December 2020
- A call for early adopters, which saw local authorities voluntarily submitting whatever data possible to get the data flowing
- A validation tool to support local authorities with their CLD development and submission, which operated offline to identify specific records or items which needed to be addressed.
We worked collaboratively with local authorities through extensive engagement and onboarding. This has been crucial in building confidence and addressing concerns about data quality which could be more easily assessed and resolved once data was flowing into the system.
Our dedicated webpage now provides technical information and data specification templates, as well as resources to facilitate the data submission process, such as FAQs and case studies to help councils identify and realise benefits from the programme. This is supported by a ‘buddying’ scheme to share learning and fast track implementation.
Arden & GEM’s programme engagement lead gives one-to-one support to councils, facilitating introductions and dialogue between adult social care and ICB staff so that they can share their expertise and knowledge with each other in understanding the linked data.
Outcomes
Data is being received into the DSCRO, pseudonymised and used to populate local business intelligence tools, with the appropriate Data Sharing Agreements in place. As of March 2023, 72 local authorities were submitting data, expected to rise to 121 by April 2023, ahead of full mandatory participation by all 152 councils by July 2023.
Using these tools, ICBs and local authorities are now able to access and analyse the data to gain a better understanding of service use, impacts of health on social care and vice versa, as well as identifying blockers in the care pathway. Other benefits include:
- A ‘single source of truth’ dataset that LAs can use to answer day-to-day requests
- Improved data quality, including completing NHS numbers for LA records
- Improved consistency and transparency within local data
- More frequent and timely monitoring of social care activity, cost and outcomes.
Linked data is already being used by ICBs and local authorities to inform healthcare planning and delivery. Examples include identifying a greater number of carers known to health and care services to invite them for their COVID-19 vaccination and using CLD data to develop a capacity and demand model to help manage patient flow through acute settings into community support.
"The long term benefits of this data resource cannot be understated. We have positioned the CLD to be the building blocks of all data and intelligence requirements for the LA."
Adam McCamley, Senior Analyst at Liverpool City Council
Next steps
Long term, there are plans to enhance data by creating additional derivations to add insight and value before it is returned to local authorities. Also under consideration are schemes to automate the data extraction process from LA systems rather than relying on manual submissions.
This project was a winner at the HTN Now Awards 2023 in the 'Digital solution for social care' category.