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HTN Now: NHS Arden & GEM CSU on linking health and social care data to improve services

At our HTN Now: Digital Social Care and Mental Health event we were joined by Jon Coolican, Head of Data Controls and Governance, and Diane Clark, Senior Business Analyst, from NHS Arden and Greater East Midlands (GEM) Commissioning Support Unit (CSU). Jon and Diane led a discussion on linking health and social care data to improve services.

To begin, Jon shared some information about NHS Arden and GEM CSU. “We have a range of services across over 90 customers, primarily health and social care organisations, including NHS England, ICSs, trusts and primary care organisations. We’re here to talk about our work supplying data management and business intelligence services.”

The data landscape

In terms of background, Jon noted that linking of data across health and social care was “inconsistent and fairly uncontrolled” pre-2012, with much of the linking taking place through local agreements rather than in a standardised manner. The Health and Social Care Act of 2o12 set out the responsibilities of NHS Digital (NHSD) including collection, analysis and presentation of national health and social care data.

“It was quickly realised that, in order to undertake that function, NHSD needed to have a regional or local presence,” Jon said. “The DSfC programme, or Data Services for Commissioners programme, was established. CSUs were asked to set up a DSCRO: a Data Services for Commissioners Regional Office.” Alongside his role as Head of Data Controls and Governance for NHS Arden & CSU, Jon is also DSCRO Business Lead.

On the role the DSCRO fulfils, Jon said, “We manage data – data warehouses, databases, huge numbers of datasets from across the health and social care system. We keep that data secure and safe, restricting access to authorised users only. We work at scale, so whilst we do work at a local level, we also work with national data across geographical regions with multiple organisations.”

The data journey

Following the 2012 Health and Social Care Act, Jon shared how he started to work with the Department of Health and Social Care in 2015 as part of the North West DSCRO to see how health and social care data could be better linked. A group was established, known as the North West Pilot, with three clinical commissioning groups (CCGs) and local authorities. “At that point, it was the CCGs who were the driving force of this,” said Jon. “They recognised that they had a lot of health data but they didn’t really have social care data.”

The pilot faced a number of challenges. Jon noted that governance was one of the biggest challenges: “How can we actually enable this linkage? What was the legal basis? What restrictions might there be? How can we collect it? We had to be very clear. What were we aiming to do with the data?”

Another key challenge was data quality; sometimes data could be incomplete with only some fields completed, for example, or it could be out-of-date or inaccurate.

The pilot allowed Jon and his team to identify challenges that needed to be worked through, but also the available benefits such as the successful linking of social care data, which enabled the CCGs involved to see more complete patient pathways. In addition, potential benefits for local authorities could be identified; for example, where local authorities might have a missing NHS number, DSCRO would be able to identify it for them.

“After the North West Pilot, we recognised what was there to take advantage of,” Jon continued. “We had proved the principle, identified the governance route and identified how we could do this So we started to work with the Department of Health and Social Care on changing this from a local pilot into a national collection.”

In December 2020, new directions were issued for a national collection for all local authorities in England, with voluntary sign up. Arden & GEM CSU worked as lead CSU and lead DSCRO, working alongside the five other CSUs spanning England, and CCGs and local authorities.

The national programme

Diane took over here to discuss how the national programme is going and her engagement work around it.

“For the last 18 months we’ve been establishing contacts within local authorities and trying to get as many of them as we can engaged and on boarded,” Diane said. “As Jon said, this is a voluntary direction so the local authorities don’t have to sign up and submit the data at this point in time.” From 1 April, the fully mandated directions will come into place, which will stipulate that all local authorities will have to submit their quarter one data for 2023.

Diane explained how the CSU started to hold engagement sessions, looking at local authorities who had said that they could submit data quickly and were keen to sign up. “We set up a project plan to start with the most interested, and then we’ve worked through the whole list of 152 local authorities,” she said. “At the moment, we’ve only got two with no contacts. 43 are currently submitting data and another nine have taken the step to sign up, with a further 68 looking to submit between now and March.”

Moving onto the benefits of local authorities taking part in the national programme, Diane said, “It’s allowed us to build up a repository. It also allows us to build up a single source of the truth with all the health and adult social care data that is in the repository.” The local authorities themselves can also begin to build up their own useful data to answer customer questions and undertake internal analysis.

“Data quality is really key,” Diane continued. “One of the hurdles that we had when we started the engagement sessions is that local authorities have been reticent to submit data because of data quality issues. We explain to them that until they start submitting the data, we can’t help them – once they do, we can undertake data quality reporting and help them to improve it. We can also help improve the quality by sending them the NHS number where it’s missing.” High level data quality reports are being produced so that the CSU have an overview of where certain fields within the specification are proving tricky, Diane added.

“We’ve very much pushed the message that data quality, especially at this early stage of the project and even when it becomes fully mandated, is secondary to actually getting the data in. We want good data quality, but until we start all working on it together, it’s not going to improve.”

Other benefits have included improved consistency and transparency across all organisations involved; the ability for more frequent and timely monitoring of social care activity, cost and outcomes; and the benefits relating to possessing linked health and social care data, such as the ability for local authorities to access health data and CCGs to access social care data.

Case studies

Jon shared a case study from the local authority in Liverpool; as part of the North West Pilot, they have been involved for some time now with the opportunity to recognise short and long-term benefits.

The case study states that the dataset is very “adaptable and fits well with the rapidly developing nature of social care without disrupting local process. Its modular nature lends itself to being able to explore innovative approaches to data collection and analysis.

“The long-term benefits of this data resource cannot be understated. We have positioned the CLD (client level dataset) to be the building blocks of all data and intelligent requirements for the LA.”

Jon commented: “I think that’s a really important message for all local authorities. We don’t want people to see this as just ticking a box – it’s a real benefit for them to use. Local authorities can use this as a major resource as well as submitting it, then it’s available to commissioners across the whole region as well.”

Lessons learned

“The engagement was really important,” Jon said. “It has to be one-to-one engagement. The local authorities are all in different situations, some of have large teams, some have tiny teams, some have a lot of technical capability and some have limited technical skills. We’ve found that we have to give tailored support so that we can support local authorities in the areas that they need.”

Jon noted that flexibility in submissions and deadlines is vital in order to encourage organisations to take part. “We didn’t want to put people off,” he commented. “Data quality is important, but we weren’t going to put people off if they couldn’t submit all fields. Even if you can only submit ten or 20 percent of fields, we are happy to receive that data, it gets it flowing and into the system. We can address the data quality – submit what you can and we can look at building it up over time.”

A practical point, Jon said, is the need to talk to IT departments. “We’re submitting data across organisations and systems, we have to potentially look at opening up firewalls and that takes time. The sooner we talk to IT departments, the better.”

Data mapping was also raised as a lesson learned. “People have different systems and people can interpret what we think is going to be the same data in different ways,” Jon pointed out. “It’s important that we have guidance that explains how we want people to interpret the definition of different fields.”

The final lesson focuses on the reference group that was established with representatives from across the country and across different systems. The reference group is made up of people who are experts in data and have experience in handling it in a day-to-day sense, so that when guidance is created, it can be sense-checked with them.

In terms of next steps, Jon brought up the national mandated collection that will begin in April 2023. There will also be a new specification at this time with additional fields in the data, with guidance written to support it.

“The dataset will be a new data standard,” Jon said. “That’s really important to help drive the standardisation and consistency, so we will be able to look at the data at a local, regional and national level and understand it to use it effectively.”

In the longer term, the CSU will be looking at enhancing data by creating additional derivations to add insight and further value before returning it to the local authorities.

“At the moment local authorities are submitting data themselves; the ideal solution that we would want to aim for is data being extracted directly from systems,” Jon said. “It’s also coming in at a regional level at the moment, to DSCRO – another longer term ambition would be for the data to be submitted nationally to what we might call central NHSD.”

At this point, Jon answered questions from the audience. You can view this section from 44:32 on the video below.

Many thanks to Jon and Diane for taking the time to join us.