The idea that people should have a stronger voice in decisions about their health and care, and that services should better reflect their needs and preferences, has been a policy goal of politicians and senior policy-makers in health for at least 20 years. Patients want it, and the evidence shows that when they are involved, decisions are better, health and health outcomes improve, and resources are allocated more efficiently.
Despite this, and some small pockets of improvement, there has generally been a lack of progress towards fully involving people in their own health and care. This report examines the reasons behind this, and considers how we can advance the cause of making person-centred care the core of health and care reform.
For all the main types of individual involvement in health and care there is:
good or reasonable evidence of its potentially beneficial impact
good or some evidence for how to do it well
a clear, stated policy commitment, but with varying degrees of active national support
some examples of excellent local practice
a general continuing lack of systematic progress or improvement.
To facilitate changes that will ensure greater patient involvement, we need:
consistent and meaningful national support
to recognise and address the different perspectives on involvement
to meet the leadership challenge
a new compact between citizens and services to empower citizens as patients, carers, clinicians, managers, and community workers to be active and equal partners.
Putting involvement at the forefront of policy and practice provides the opportunity not only to create an effective and sustainable health and care system, but also to contribute to a more equitable and healthier society.
NHS England's programme of work on transforming participation provides a first step, but more must be done. In particular, national bodies need to:
develop a model of professional education and training based on working with users and citizens
provide staff and patients with access to high-quality tools for structuring and recording care-planning and shared decision-making
measure involvement and hold organisations to account
enable local organisations to focus on patients not politicians, with a national approach to reform that supports organisations to lead change locally.
Audio explanation of the key priorities
Catherine Foot presents our report People in control of their own health and care, published in partnership with National Voices. Catherine explains in detail the eight key priorities to transform individual involvement in health and care. She goes on to discuss the report's key recommendations, including the need for a fundamental national conversation about a new relationship between citizens and services.