Building a health and care system that knows what matters to people

National Voices is the leading coalition of health and social care charities in England. They have more than 170 members covering a diverse range of health conditions and communities, connecting them with the experiences of millions of people. They work together to strengthen the voice of patients, service users, carers, their families and the voluntary organisations that work for them.

Why health and care data matters to me - Charlotte Augst

Charlotte Augst, Chief Executive of National Voices

“What people want is care that responds to their individual needs and priorities. The more they live with ill health, impairment or disability, the more crucial it is that services are able to understand the specifics of their situation – what helps or hinders people to live well. The pandemic, and not least the vaccine programme, have also clearly shown that communities need this responsiveness. They need the promise of universality not to mean ‘as far as we know, this works for most people’ – but ‘as much as we can, we will make this work for you’.

"Data and culture are the two most central factors for building a responsive, equitable, compassionate health and care system. And data and culture are directly and indirectly connected. A lack of interest in the lives people live with chronic ill health, with addiction, with violence, trauma or inequality means we don’t understand what would help – we don’t have the data. A lack of data means we too often define ‘what works’ from a system, rather than a personal perspective.

"The NHSX data strategy addresses many of the issues we need to get right in order to build a health and care system that knows what matters to people and communities and therefore can respond to those needs and priorities. Refreshingly, it focuses on the work of health and care professionals in the care they provide, rather than on structures, tech or overblown transformation initiatives. Its unpacking of concentric circles around the patient, the team, the system and the wider research and innovation landscape is a good way of conceptualising what will be gained from better data use, whilst staying focused on what matters most: a better experience of care, including better access and outcomes.

"The idea that people themselves can contribute data and insight is sometimes misunderstood as being all about ‘data mining’ – with innovators and decision makers getting carried away in a flurry of tech optimism: harvesting data about people’s blood pressure, exercise or mood. But the truly transformative potential of data for health and service improvement is that people themselves can steer the services and its responses in ways that work for them: ‘this is what I need in a mental health crisis; I want my carer to be copied into correspondence; this what I have observed works for me when my migraines flare up; this is what I want for the end of my life’.

"We at National Voices stand ready to work with NHSX and all health and care partners to focus our efforts for transforming data use on this most crucial question: how can people and communities drive up the quality and value of services by ensuring those in charge of their care know what they need and want?”