Involving users and carers in service planning is one initiative that aims to transfer power from policy makers and the medical profession to the public. Benefits of involving users and carers in service planning fall into two main categories: democratic principles and service improvement.
- In a setting of prioritised and rationed health care services (like the NHS), including users and carers in service planning can encourage:
- participatory democracy
- public accountability
- transparency (Nilsen et al 2006).
- User involvement acknowledges people’s capacity for self-determination, providing them with a say in the planning of their care (The autonomy principle in the Four Principles Framework, See section 2: Priorities and Rationing). The WHO’s Declaration of Alma Ata states that “people have a right and duty to participate individually and collectively in the planning and implementation of their health care” (WHO 1978).
- Involving users in service planning increases their commitment to understanding and seeking to influence issues that affect them (Entwistle and Hanley, 2006).
- User involvement can improve the quality of public health activities (Entwistle and Hanley, 2006). For example, patients with long-term illnesses often have insights about their care that health care providers and policy makers lack.
- Users and carers may not have the same conflicts of interest as medical professionals and policy makers (who may have a financial interest in health services).
- Creation of a partnership between the public and technical experts.
- Involving service users potentially leads to more accessible and acceptable health services, health research of greater quality and clinical relevance, and greater uptake of findings (Nilsen et al 2006).
- Medical professionals are socialised to view themselves as authorities. See module 4a Concepts of Health, Wellbeing and Illness, and Aetiology of Illness, Section 2: Sociological Conceptualisation of Medical Knowledge and Power.
- Users and carers may have biased views on some issues. (For example, media coverage of the MMR vaccine may have affected parents’ views on vaccinations).
- Involving users may make health interventions or research projects longer and costlier.
- Users and carers may not be interested in participating. It may be difficult to ensure representation from the whole spectrum of society, particularly those groups who are traditionally hard to reach.
- Users may lack technical knowledge, which may limit the degree to which they can participate.
There are different degrees of user and carer involvement (see section 4: Consumerism and community participation) and different ways of supporting it. User involvement can seek the views of individual users or groups of users and can be initiated by users or professionals. (Fudge, 2008) Whilst there are undoubtedly benefits to involving the public in service development, there is no consensus on how to go about Patient and Public Involvement (PPI), evaluate its impact, or ensure diversity and meaningful input from public representatives. (Ocloo, 2016)
Box 1: Public Participation Case Study
Healthcare commissioners in Dorset, England wanted to involve patients and clinicians when re-designing their community pain service.
Patient representatives were recruited from a local patient group who wanted to improve pain services in the area, and through Dorset Pain Society. Commissioners also engaged with clinicians in primary and secondary care and allied health professionals and used surveys, email, letter and telephone correspondence to gather feedback on service development.
Feedback from the engagement process fed into the service specification for a new pain service. The service specification reflected needs identified by patients which included:
NHS England Transforming participation in health and care. See Public participation: Case studies https://www.england.nhs.uk/wp-content/uploads/2013/09/trans-part-hc-guid1.pdf
Simpson and House (2003) describe six stages to be considered when involving users and carers in service planning:
- Deciding on the main goal
- Choosing a mechanism of involvement to achieve that goal
- Identifying potential barriers and solutions
- Monitoring the process of involvement
- Evaluating outcomes of the project, measuring whether the goal has been met
- Using data collected to inform running of this and future projects
In the UK, public involvement is a statutory duty of NHS organisations. National organisations such as The Patient’s Forum, Consumers in NHS Research, The Commission for Patient and Public Involvement in Health (later replaced by Local Involvement Networks - LINks) were set up to help involve users and carers in NHS service planning. While the idea of user involvement is heavily subscribed to, there is limited evidence on the relationship between user involvement and quality of care. There is evidence that user involvement in service planning has contributed to changes in service provision, but the effects of these changes on quality of care have not been reported (Crawford et al, 2002).
Since the Health and Social Care Act of 2013, each Local Authority is responsible for commissioning a Health Watch organisation, which acts as the voice of the public in health care. (Box 2)
Box 2: The role of Local Health Watch organisations
These act as a voice for current and potential users of health and care services. Local Health Watch organisations have statutory powers including:
As well as providing information about services, LHW organisations represent the views of service users and reach out to communities to ensure that all groups and individuals get a chance to have their voices heard. They [ensure] that the health and care needs of their communities are understood and met. As part of their function of contributing to safety and quality of services, LHW are involved in the Quality Surveillance Groups run by NHS England.
Source: Local Government Association (2014)
- Crawford MJ, Rutter D, Manley C, Weaver T, Bhui K, Funlop N, Tyrer P (2002). “Systematic review involving patients in the planning and development of health care”. BMJ, 325: 1263-5.
- Entwistle V, Hanley B (2006). Involving the public. In: Pencheon D, Guest C, Melzer D, Muir Gray JA (eds) Oxford Handbook of Public Health. Oxford University Press.
- Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD (2006). Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material (Review). Cochrane Database of Systematic Reviews, Issue 3.
- Ocloo J, Matthews R.(2016) BMJ Qual Saf, 0: 1-7. doi:10.1136/bmjqs-2015-004839
- Simpson EL, House AO (2003). “User and carer involvement in mental health services: from rhetoric to science”. British Journal of Psychiatry, 181: 89-91.
- WHO (1978). Declaration of Alma-Ata. http://www.who.int
- The Patient’s Forum
- Consumers in NHS Research
- Local Government Association (2014): A councillors guide to the health system in England.L14-232 http://www.local.gov.uk/documents/10180/5854661/A+councillor's+guide+to+the+health+system+in+England/430cde9f-567f-4e29-a48b-1c449961e31f
- Local Involvement Networks
- NHS England Transforming participation in health and care: https://www.england.nhs.uk/wp-content/uploads/2013/09/trans-part-hc-guid1.pdf
© Rebecca Steinbach 2009, Rachel Kwiatkowska 2016