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User and Carer Involvement in Service Planning

Equality, Equity and Policy: User and Carer Involvement in Service Planning

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.

Benefits

Democratic principles

  • In a setting of prioritized 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).  

Service improvement

  • 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).

Barriers

  • Medical professionals are socialized to view themselves as authorities. See section: Concepts of Health and 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. Involvement can be initiated by users or professionals. In practice, health professionals determine how service users will be involved in service development, which may limit the change that can be achieved (Fudge, 2008) (See Box 1).

Box 1: User involvement in stroke services in London

Fudge and colleagues (2008) undertook an ethnographic study of user involvement in a programme to improve stroke services in two London boroughs. Through participant observation and key informant interviews the authors found that health professionals controlled the interpretation of user involvement and the ways in which users were involved. However, the concept of user involvement differed within the same health care organisation. They found two different responses to the idea of user involvement among health professionals: one group of health professionals viewed user involvement as an exercise in democracy, while the other group of health professionals viewed user involvement as an NHS requirement. The authors found that only a small proportion of the stroke population participated and the domains in which users could exert their expertise were limited. Users were more interested in participating in time limited projects with tangible outputs related to training health care professionals, developing information and supporting stroke survivors rather than project management. The authors concluded that user involvement did little to alter patient-health professional relationships.

Simpson and House (2003) describe six stages to be considered when involving users and carers in service planning:

  1. Deciding on the main goal
  2. Choosing a mechanism of involvement to achieve that goal
  3. Identifying potential barriers and solutions
  4. Monitoring the process of involvement
  5. Evaluating outcomes of the project, measuring whether the goal has been met
  6. Using data collected to inform running of this and future projects

In the UK, public involvement is a statutory duty of NHS organizations. National organizations such as The Patient’s Forum, Consumers in NHS Research, and The Commission for Patient and Public Involvement in Health (recently replaced by Local Involvement Networks - LINks) have been 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).

 

References

  • 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.
  • Fudge N, Wolfe CDA, McKevitt C (2008). “Assessing the promise of user involvement in health service development: ethnographic study”. BMJ, 336: 313-7.
  • Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD (2006). Methods of consumer involvement in eveloping healthcare policy and research, clinical practice guidelines and patient information material (Review). Cochrane Database of Systematic Reviews, Issue 3.
  • 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

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© Rebecca Steinbach 2009