Using data to improve services
The context
“Data can make a life better, or even save it” (Department of Health and Social Care, 2023)
This quote captures the importance of data in adult social care. ‘Data’ usually refers to facts or information that can help people make better decisions, including commissioners, policymakers, managers, practitioners, people who draw on care and support, and unpaid carers.
When used well, data can help services understand what people need, identify gaps in support, plan resources more effectively, and improve outcomes for individuals and communities. In this sense, data is central to evidence-based policy and practice: decisions are grounded in information rather than assumptions.
However, using data in adult social care is not always straightforward. Data can be incomplete, inaccurate, inaccessible, or difficult to interpret. It can also raise important questions about trust, transparency, power, privacy and accountability, particularly when people do not know how information about them is collected, shared or used.
From November 2025 to May 2026, the IMPACT Network brought together care professionals, researchers, and people with lived experience. The goal was to find practical, ethical ways to put people back at the heart of social care data.
The Network provided a space to examine how data can support better decision-making but also how it can cause harm when it is inaccurate, poorly understood, or used without the involvement of people with lived experience.
Ultimately, this work is about identifying practical ways to ensure data is used to improve lives, strengthen care and support, and promote more transparent, inclusive and accountable adult.
IMPACT Factfile
- Year: 2025 – 2026
- Delivery Model: Networks
- Themes:
- Resources:
Network members
Networks are meeting across the UK, co-ordinated by:
In England:
Moorview Care is based in Yorkshire and supports autistic people and people with a learning disability to live a ‘Gloriously Ordinary Life’.
Staffordshire County Council
CIRCLE is the Centre for International Research on Care, Labour and Equalities at the University of Sheffield. This Network brought together researchers, practitioners and Experts by Experience with a focus on mental health.
In Wales:
Where I want to Live is a charity based in Wales which empowers people with learning disabilities to discuss, share and plan where and how they live.
Welsh Government/HSCEY – Improvement Division
Evidence review
The evidence reviewed by the Networks highlighted both the importance of data in adult social care and the significant challenges involved in collecting, sharing and using it effectively. The review explored research, policy and practice examples from across the four UK nations, focusing particularly on how data can support evidence-based practice and service improvement.
- The review found broad agreement that good-quality data can help improve care and support services, identify unmet needs, inform commissioning and support better outcomes for people drawing on care and support. Data was described as central to evidence-based policy and practice, enabling decisions to move beyond assumptions and anecdotal experiences. At the same time, the evidence also highlighted that adult social care data is often fragmented, inconsistent and difficult to integrate across systems and organisations.
- Unlike the NHS, adult social care includes a wide range of providers, services and forms of support, resulting in significant variation in how data is collected and recorded.
- A recurring theme across the evidence was the tension between increasing data sharing and protecting privacy, consent and trust. While policies across the UK increasingly promote digitalisation and greater integration between health and social care data, concerns remain regarding governance, transparency, ethics and the risk that some groups become invisible within data systems. The evidence also suggested that social care data can become overly focused on clinical or health-related information, with less attention given to people’s social experiences, relationships, wellbeing and quality of life.
- The evidence also highlighted practical challenges linked to digital infrastructure, workforce capacity, inconsistent software systems and varying approaches to data collection. In some cases, digital systems were found to create additional administrative burdens for staff rather than reducing them.
Alongside these challenges, the review identified examples of how data can support positive change in practice and policy. This included the use of evidence-informed approaches to improve support for people with learning disabilities, frameworks bringing together ageing-related data, and interactive dashboards developed with unpaid carers and people with lived experience. These examples highlighted the potential of data to support more informed, preventative and person-centred approaches when combined with local knowledge, co-production and lived experience.
Overall, the evidence suggested that while there is increasing recognition of the value of data within adult social care, significant questions remain about what data should be collected, who defines what matters, how data is used, and how systems can ensure that people remain visible within increasingly digitalised forms of care and support.
All the devolved nations have a shared commitment and similar policy drives to increase digitalisation and to integrate health and social care data, but there are some subtle differences.
- In England, Wales and Scotland, adult social care is managed locally by councils or local authorities.
- In Northern Ireland, care is managed by regional Health and Social Care Trusts. Northern Ireland’s fully integrated data structure has already shown real improvements for individuals with complex needs.
Across all four nations, adult social care is a “means and needs” tested service, with differences in Scotland, where personal care is provided for free.
However, when looking into policies on the use of data in health and adult social care, all four nations are implementing a two-fold strategy which includes the following:
- Digitalisation to enable data collection, and
- Integration of health and social care.
The argument for increasing digitalisation was highlighted at the start of the Covid-19 pandemic. The assumption is that ‘going digital’ would help the health and social care system to improve through four priorities:
- Prevention,
- Personalisation,
- Performance and
- People.
Many care providers are now using digital care records, but there are multiple systems in use and a lack of consistency in the use of identifiers, making it difficult to compare data to understand the ‘big picture’. One risk is that some groups become less visible if their data is not recorded. This also makes it difficult for health and social care data to be integrated in line with policy objectives.
With regards to the integration of data, Northern Ireland’s integrated approach to data has demonstrated improvements to care services and delivery. It has been suggested as a way to improve services for people with complex needs, although this does not necessarily mean at a lower cost, as often a more integrated approach uncovers unmet needs.
Meetings 1 and 2: Engaging with the evidence and sharing new learning
Networks explored the existing evidence on the basis of their lived experience and practice knowledge. Most of the networks felt that often data was too abstract, and they found it difficult to relate to. There was strong agreement that data should start with the person. During discussions, they identified some key themes:
Language: this emerged strongly as an area which cuts across many of the points identified above.
Person-centred data ownership: people expressed the view that they should be more involved with data collected about them so that they have more control – “nothing about us, without us.”
Trust is important: one person said, “If you haven’t got that [trust], you’ve got nothing. Without it, individuals will not feel safe enough to share their stories or seek support.”
Marginalisation: some groups are absent or under-represented in large datasets, leading to bias or the risk of unmet needs. People from marginalised communities (such as refugees and asylum seekers) may be reluctant to divulge personal information.
Person-centred Vs big data: often data which is collected for statistical purposes can feel like a ‘tick box’ and not person-centred. Service users are often more concerned with personal data, but managers and commissioners focus on big data, often without mutual understanding.
The duality of data: it was suggested that data can be seen as both a tool for support and as a source of harm. This was particularly relevant in mental health data. It was noted how, in detention settings, notes can be intentionally “weaponised” to punish or control individuals. Another participant shared the story of a gentle, autistic person who, after a single incident driven by sensory distress, was left with “permanent ‘violent’ marks on her notes.” This static record creates a powerful prejudice that clinicians and staff struggle to see past.
Data needs to be ‘live’: this is important so that responses can be tracked and patterns explored. For example, if someone responds to a question about feelings with a 2 on Monday and a 6 on Thursday, their response may be averaged at 4, which wouldn’t be a reflection of either day. One participant said, ”Anytime there are any issues, the first thing the social workers will ask will be ‘give us a picture.”‘ ‘Give us a picture of today; give us a picture of the week. Give us a snapshot. But why does it have to be a snapshot? Why can’t it be like you said, live data? That’s all well; here are six months’ worth of snapshots. You tell me where we’re going wrong or where we can amend.”
Staff understandings of data: if staff do not know why data is being collected and how it is used, this can lead to incomplete recording and/or inconsistencies.
Lack of integration: while social care data is often criticised for not being joined up and integrated with NHS/health data, it was also noted that there is a lack of connection/integration with other services such as police and the prison service. This can lead to re-traumatisation as individuals have to re-share their stories. Repeated data collection is a source of frustration for many service users and their carers.
Barriers to positive change include: lack of understanding and trust, financial and time constraints, organisational red tape and complexity of systems, shifting targets, duplication, limited staff, and a culture resistant to new ways of working.
Meetings 3 and 4 – What Networks wanted to change…
In meetings 3 and 4, Networks developed their action plans using the theory of change; these are only a few snapshots of the changes they wanted to see and potential actions.
Staffordshire County Council are working on mapping and understanding “the journey of data alongside the journey of the person”. This will inform training for staff so that they are better informed when requesting data from service users.
Moorview Care is focusing on improving how personal data is collected from people and used by staff to make it more personal and meaningful. They are working on a revised digital wellbeing tool which will save time, avoid duplication and improve accuracy with the aim of improving the quality of life of the people they support.
CIRCLE identified many areas that they wanted to work on, but training and education emerged as the most immediate focus: “We need to start somewhere that makes a difference now.” They are working on creating resources that are accessible, trauma-informed and co-produced.
CIRCLE has made connections with another IMPACT Network which looked at ‘Exploring the use of artificial intelligence (AI) in adult social care’
Where I Want to Live will be piloting their digital toolkit to assess whether it can successfully feed into larger data sets on a national scale. A further aim is for people with learning disabilities to understand why they are sharing their data, to trust the process and feel motivated to engage. They will develop training for staff and family members for when they are supporting people when sharing their data.
They are also working with the Welsh Government Network.
The Welsh Government network agreed that current data use is often descriptive rather than learning-focused, and there is an opportunity to understand how data is used and how services can be improved. They will develop and test a market intelligence dashboard which draws on existing published data, alongside drafting guidance for Regional Partnership Boards which is informed by feedback from care providers.