Navigating the digital frontier: building infrastructure and empowering people through technology in social care

The issues are not simply about technical infrastructure—but about power, trust and agency. Several participants emphasised that whilst we frequently use the language of “empowerment,” what people actually need is agency: the space, resources and trust to exercise control over their own information and care.

During the discussions, several critical elements were identified for building the right infrastructure:

Trust and transparency through co-production. People need to understand not just that their data is being collected, but why, how it will be used and what benefits it will bring—both to them individually and to the wider care system. As one participant observed, we need “informed consent, not just consent”—people must understand what they’re agreeing to.

Interoperability and expanding the use of shared care records. Despite years of effort, we still have situations where different departments in the same hospital can’t share patient information, let alone achieve seamless data flow between health and social care. Minimum standards for interoperability are still required. Yet participants shared examples of progress: when care providers demonstrated the value of shared data through tangible insights, reluctant organisations suddenly became eager to participate.

Collecting the right data to balances the need for regulatory consistency with operational innovation. As one participant noted, “We need regulation, but we don’t want to create an industry where suddenly it becomes over-regulated and kills innovation.” The solution may lie in what several called “standards light”—clear minimum requirements that leave room for innovation above the baseline.

A new model of data governance with user involvement. Participants discussed innovative approaches, including data commons where communities collectively own and benefit from their data, and trusted research environments where data can be used for the public good whilst maintaining privacy. The key is ensuring people who draw on care and support are genuinely involved in governance, not just consulted after decisions are made.

Financial sustainability to underpin local technology choices and infrastructure. Local authorities facing budget crises struggle to invest in preventative technology that might save money in five years’ time. Without addressing this fundamental challenge, even the best technical infrastructure will fail to deliver its potential.

Measuring what matters: outcomes, not outputs

A recurring theme throughout our discussions was the fundamental mismatch between what we measure and what actually matters.

This fixation on outputs—counting tasks completed, forms filled, systems implemented—actively works against the personalised, relationship-based care everyone agrees we need. Several participants shared frustrating examples: local authorities celebrating that care visits happened on time whilst missing that people felt rushed and unheard; providers ticking boxes for “activities delivered” while failing to ask whether those activities helped someone achieve their goals.

The shift we need is fundamental: from measuring what the system does to measuring what difference it makes to people’s lives.

Critically, this isn’t about collecting more data—it’s about collecting the right data. As one participant observed: “There is no accountability mechanism to say social workers input data because they want to get packages commissioned, the NHS inputs data because they’re scheduled. None of it is really about the person.”

The challenge for national standards is clear: how do we create frameworks that incentivise and measure what truly matters—whether people are living the lives they choose—whilst avoiding the trap of reducing complex human experiences to simplified metrics? The answer, participants suggested, lies in co-production at every level, ensuring those who draw on care and support don’t just receive services but actively shape how success is defined and measured.