User involvement

There are various forms of activity that are described as user involvement. There are also a multitude of means by which user involvement is undertaken. There are significant issues in practicing effective user involvement.

The involvement of people who use services in evaluating and improving services is now common practice. There is general agreement that user involvement of this kind is fundamental to service improvement. In large parts of the public sector, including the NHS, such involvement is required. Regulatory bodies expect that user involvement is practiced within some services.

Other forms of involvement have also developed in the drugs field. This has meant that people are not only involved in service evaluation and improvement of the services they are using. People who have personal experience of problem substance use (see lived experience) can be involved in the design, commissioning, management and delivery of services and in the development of wider service provision and the development of policy.

This has led to various contested areas:

Who can be involved? Apart from people currently using services, the user involvement activity described above may, for some, also include;

  • people who have who have previously used the service but no longer use it. This may include people who no longer require the service. There is an issue here surely of the currency of their knowledge of the service. If they are ‘graduates’ of the service their experiences may be untypical – have they benefitted or been failed by the service? Is this experience representative? Have they a perspective now which is not the perspective they had at the time they were engaged with the service and, perhaps, the general perspective of people at the time they use the service? Are they representative of the people using the service now?
  • people who are not using a service but would be eligible and would perhaps benefit from using the service. This work may develop insight as to why services are inaccessible or unacceptable for some people.
  • People excluded from current service provision.

There is also contestation of the methodologies of user involvement.

Should people be invited and supported into existing decision-making processes – meetings involving professionals and have ‘a seat at the table’. How are people supported to do this and what are the real power dynamics in the status of people around that table? How representative of people using services are such ‘users’? In professionalising their input, do they become less representative?

Should consultation processes include a wider range of people who are not interested in or able to attend and contribute to a long series of formal meetings with professionals using jargon

etc. but whose experiences and opinions can be captured in other ways and be represented by other peers? Peer research is designed to explore the potential of this approach.

Is there a role for personal narrative and what validity has the ‘stand up and tell your story’ approach? (See personal narratives)