Patient involvement must translate into practical, measurable steps, to be effective, argue Catherine Foot of the King’s Fund and Jeremy Taylor of National Voices

Politicians like to take comfort in surveys that show high levels of national satisfaction the NHS. But for all the strengths of the NHS, there remains a persistent weakness when it comes to involving patients and families in their health and care.

For example, only around half of patients in hospital report that they have been involved as much as they would like in decisions about their care. This figure has remained broadly static for a decade.

Jeremy Taylor

‘The system should be held to account for how well it delivers what matters to people’

The NHS Five Year Forward View is the latest in a long line of policy documents to proclaim the importance of empowering people to have more control over their own health and care. But what does this really mean? Why does it matter? And why has there not been more progress?

The King’s Fund and National Voices have published a report, People in Control of their Health and Care, which attempts to answer these questions.

What does ‘patient involvement’ mean?

Involvement isn’t one thing - it covers a range of activities and approaches, each with different purposes, philosophies, histories and terminologies. The diagram below sets out the main ways in which people can have more control over their health and care.

People in Control of their Health and Care

People in Control of their Health and Care

Whether it’s shared decision making, supported self-management, personal health budgets or other approaches, broadly similar conclusions can be drawn about progress to date:

  • there is evidence of impact or potential impact
  • there is evidence for how to do it well
  • there is a clear, stated policy commitment
  • there are examples of excellent local practice
  • but there is a lack of systematic adoption.

This matters because involving people improves outcomes and can save costs. It matters ethically. And it matters because involvement is fundamental to achieving a high quality service.

The health system is currently held to account for the outcomes it achieves. The NHS Outcomes Framework 2014/15 essentially asks three questions:

  • Is it safe?
  • Is it effective?
  • And is it a good experience?

But the reality of accountability feels different: there is a huge focus on financial performance and a tendency to use satisfaction measures as proxies for experience. In fact the system should be held to account for how well it delivers what matters to people – and involving people in decisions is fundamental to that.

What explains our lack of progress?

There are both practical and deeper cultural barriers to progress here. Leaders can often be uncertain about what this agenda involves and how to do it well. Access to the necessary support and tools continues to be patchy at best.

But more fundamentally, this agenda challenges our current power structures. It requires all of us – citizens, patients, professionals – to think about our health system quite differently, and to do different things.

What can be done about it?

The forward view represents a comprehensive and intellectually coherent attempt to set out an agenda for empowering people. And its “new deal”, which gives patients and communities equal priority status alongside new models of care, suggests a strength of commitment not seen before. But, of course, as yet it remains just words on a page.

Achieving the necessary cultural and practical shift to give patients more control is no simple task. What is needed is no less than a fundamental rethinking of the purpose of our health system and all our roles within it.

Here are some things that we suggest need to happen:

National bodies need to:

  • Reframe professional education and training to make working with users and citizens fundamental to professionalism
  • Ensure that large cohorts of clinicians get access to training in areas such as health coaching, motivational interviewing, risk communication and eliciting people’s values and preferences.
  • Provide access to tools and support, such as patient decision aids, for structuring and recording care planning and shared decision making conversations.
  • Measure involvement and hold organisations to account for it.

Local leaders need to ask themselves:

  • How do we make sure we know what really matters to the patients and communities we serve?
  • How well are we doing in each of the eight priorities for individuals’ involvement, and how could we improve?
  • How skilled and engaged is our workforce, and what are we doing to help them?
  • How do we work with patients, carers, local communities, patient leaders and the voluntary and community sector to get this right?

The NHS Five Year Forward View sets out a vision of a new relationship between patients and communities, and new models of care. Without a commitment to improving people’s involvement in decisions about their health and care – and the practical steps to give form to that commitment – the vision is likely to remain fine words on a page.

Catherine Foot is assistant director, policy, at the King’s Fund and Jeremy Taylor is chief executive of National Voices