Building Trust in Data Use Across Health and Social Care: Reflections on the National Engagement on Data – Cohort 1 Report

Care England, as a key stakeholder in shaping the future of data use in health and social care, was pleased to contribute to the roundtable discussions that informed the National Engagement on Data – Cohort 1 Report, commissioned by NHS England and the Department of Health and Social Care (DHSC). We welcome this significant step towards embedding public trust in the governance and value of health and care data.

 

Overview

The central question posed during this national engagement was clear: What does the health and social care system need to do for people to feel confident in how their data is being used? The public’s answer was equally clear—transparency, accountability, and benefit to the public must be the foundation.

This first phase focused on three policy areas:

• Governance of Secure Data Environments (SDEs)
• Value generation from data use in research
• The introduction of a Data Pact to communicate data principles to the public

Key Insights and Reflections

Governance of Secure Data Environments

Public expectations for SDEs reflected a nuanced understanding of trade-offs between consistency and local relevance. There was strong support for:

• Transparent decision-making underpinned by the Five Safes framework
• Inclusion of diverse, lay voices alongside technical expertise on Data Access Committees (DACs)
• Streamlined, efficient processes without compromising public engagement

Care England supports the call for a nationally coordinated but locally informed approach. Central oversight must not come at the expense of understanding regional and sector-specific contexts, especially in social care where trust and proximity to service users are key.

Realising the Value of Data

Participants broadly supported the NHS charging for data access, provided any surplus is reinvested directly into health and care services. Importantly, financial value must not override the principle of public benefit.

We as an organisation echo the view that value from data should be measured not just in financial terms, but in outcomes—earlier access to treatments, increased research participation, and improved care quality. This is especially relevant in the social care sector, where resource constraints and systemic underinvestment make such returns particularly impactful.

The Data Pact

While the draft Data Pact was welcomed, many participants were disappointed that it lacked enforceability. The language was often seen as too technical or vague. There was a clear appetite for:

• A legally resonant document with consequences for breaches
• Multiple versions tailored for different audiences
• A visible commitment to ongoing public engagement and review

Care England urges policymakers to treat the Data Pact as a living, evolving tool, not a one-off communication. It must reflect both current safeguards and public expectations as they continue to develop.

Strengthening Public Confidence: A Shift in Understanding

By the end of the deliberative process, many participants felt more confident about how their data is used—driven by increased understanding of governance structures, the purpose of data use, and the safeguards in place. However, this confidence is not universal, and must not be assumed.

Marginalised groups, including care-experienced individuals and those with prior negative interactions with state systems, expressed ongoing scepticism. Their concerns—about misuse, lack of transparency, and weak recourse—must be taken seriously.

Care England’s Position

This report is a timely reminder that trust cannot be demanded—it must be earned through openness, consistency, and meaningful participation. For providers in the care sector, data has the potential to transform services, but only if it is used responsibly and with the informed consent of those it affects.

We call for:

• Full inclusion of adult social care providers and service users in all future phases of engagement
• Continued investment in digital infrastructure to ensure equity of access and use across health and care
• A clear, enforceable framework for data use that is co-designed with the sector and the public

Professor Martin Green OBE, Chief Executive, Care England, said:

“Building public trust requires practical steps: ensuring adult social care providers and service users are fully included in data governance structures, making digital infrastructure investment a reality across all care settings, and embedding enforceable standards for how data is accessed and used. Care England welcomes this report but urges government and system partners to prioritise implementation, not just consultation.”

The report provides a strong foundation, but implementation must match its ambition. Care England remains committed to working with DHSC, NHSE, and sector partners to ensure that data is used ethically, fairly, and in the best interests of those who use and deliver care.