Patient involvement and empowerment

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The King's Fund has been actively examining patient involvement since the 1980s. In this blog, Kirsty Morrison takes a look through our digital archive to explore the Fund's work in this area.

While sifting through results from a recent literature search, I came across this quote from a Health Service Journal article:

Looking back to the health care revolutions that helped transform practices in the past identifies the strength of ambition and passion that is needed to rescue modern-day care. But most importantly, it shows it [transformation] is achievable.

This month's digital archive blog takes a look back at The King's Fund’s work on patient involvement and empowerment, and how  those who use health services can use their 'strength of ambition and passion' to influence the delivery and design of their care.

The King's Fund has been actively examining patient involvement since the 1980s. Our work has consistently demonstrated the impact and importance of involving patients in decisions about their care.

Self-advocacy

In 1988, our mental health seminar report Making our voice heard: strengthening alliances between people who use services outlined participants’ views on what ideal patient self-advocacy should look like, the barriers experienced when trying to achieve this, examples of good practice and possibilities for action. Participants included patients from psychiatric hospitals and mental health day centres, and representatives from MIND, as well as national self-advocacy organisations and district health authorities.

In 1990, The King’s Fund published Power to the people which provided practical help for people working in and around health services who were keen to enhance users' experiences. It outlined initiatives concerned with shifting the balance of power towards those using services and away from those providing them. The King's Fund Nursing Development Units published We thought we knew...: involving patients in nursing practice in 1995. Using interviews with staff, this book offered examples of patients and clients becoming actively involved in delivering care and service developments, and included practical guidelines to help those considering the implementation of patient participation in their own units.

Shirley McIver: - Obtaining the views of...

This series of King's Fund publications from the early 1990s aimed to help health service staff obtain the views of service users on their own care – including outpatients, and users of mental health services, primary and community health services, and health services generally – and patients’ views on the quality of health information. The series cited evidence that there are certain elements, such as the quality of their relationship with the care giver, good communication, appropriate information and a successful outcome to the treatment, that service users value whatever the service area. The publications included examples of questions to ask users about their concerns and examples of methods to achieve useful information in different circumstances and with different types of service user.

Patient empowerment

In 1995, the Patient Empowerment Focus Group of the NHS Executive commissioned The King's Fund Centre to run a workshop designed to meet three objectives: to develop a working definition of what is meant by patient empowerment; to identify a strategy to achieve this, as well as identifying where responsibility for such an achievement should lie; and to discuss possible indicators of successful outcomes. The report on this workshop summarised two recurring themes: the need to empower both individual patients receiving care, and user organisations and the public to represent their views to policy and decision-makers.

Citizens' juries

Our 1996 publication Health care partnerships: debates and strategies for increasing patient involvement in health care and health services was the first work in the Promoting patient choice series. It provided a guide to individual and public involvement in decision-making and described the debates and strategies around increasing user involvement in health care for use by managers, professionals, and voluntary and public agencies. One proposal was to establish 'citizens' juries': independent panels of patients who would be included in decision-making processes in order to maintain openness and promote the interests of patients rather than providers.

Our 1998 publications Ordinary wisdom: reflections on an experiment in citizenship and health, Healthy debate?: an independent evaluation of citizens' juries in health settings and Our nation's future health services: a second better chance evaluated the benefits of these juries. Jury members reported that they found the experience rewarding, as they were able to address specific health service issues, hear from witnesses, share ideas and make practical recommendations to health authorities.

This body of work illustrates that patient involvement is achievable and can improve the quality of patient care. Publications such as these have inspired The King’s Fund to re-examine its past work on these issues and to identify where there is further work to be done. You can view more recent King's Fund publications on this topic on our library database, including our 2014 report People in control of their own health and care: the state of involvement.