We have put together a list of the most common definitions used in patient insight and involvement work.

If there are any others you can think of that we may have missed then email us.


Patient activation is a widely recognised concept. It describes the knowledge, skills and confidence a person has in managing their own health and health care.” The Patient Activation Measure (PAM) refers to a means of measuring ‘patient activation’. (Supporting people to manage their health – The King’s Fund, 2014)


Public engagement describes the myriad of ways in which the activity and benefits of health and care services, research and education can be shared with the public. Engagement is by definition a two-way process, involving interaction and listening, with the goal of generating mutual benefit. (Based on the National Coordinating Centre for Public Engagement definition).


Patient participation generally either refers to patients, carers and the public participating in clinical research or in Patient Participation Groups (PPGs) at GP practices.


We use patients to cover a variety of terms for the people who use health and care services – these include, but are not limited to: patients, service users, customers, consumers, clients, mothers, parents, carers, and families.

Patient insight – also known as patient experience

Collecting feedback from patients about their care or treatment and using this insight to improve services.

Patient leadership

Patients are leaders and agents of change that improve the quality of health services and promote health and wellbeing within their communities.

Patient partners – sometimes known as representatives

Represent the perspectives of patients to help health professionals understand what works, and how they can improve.

Person-centred care – also known as patient- and family-centred care

Person-centred care supports people to develop the knowledge, skills and confidence they need to more effectively manage and make informed decisions about their own health and health care. (The Health Foundation, 2014)

Personal health or social care budget

Personal budgets in social care and personal health budgets in health care are allocations of funding that allow individuals to choose and purchase services in order to meet and support their needs. (The King’s Fund, 2014)


The population served by a particular, or group of, health and care services, research or education organisations. This includes community and voluntary sector organisation involvement and engagement.

Shared decision-making

Shared decision-making is a process in which clinicians and patients work together to make decisions about care and treatment based on both clinical evidence and the patient’s informed preferences. (The King’s Fund, 2014)

Supported self-management

Supported self-management means giving people with long-term conditions the support they need to increase the control they have over their own lives and to minimise the constraints imposed on them by their state of health or disability. (The King’s Fund, 2014)