User Involvement: Who is engaged?

What does research tell us about involvement?

Rosemary Chesson

Health Services Research Group

The Robert Gordon University

Terminology and definitions

Research

• designed to provide new knowledge

• it is generalisable

• findings open to critical examination & accessible to all

‘

’

Telford et al, 2002

‘refers to the appropriate, active participation of all groups (e.g patients, carers, local community and wider public) as partners in their own care and in the planning, monitoring and development of health services.’

Kelson, 1997

Involvement

Arnstein’s ladder of participation

Partnership

Placation

Consultation

Informing

What does research tell us?

• variable across countries & UK

• variable between services

• variable between diff care/client groups

• not straightforward to do

• resources needed

Few evaluations of theeffects of involvement

Little evidence to support claims of

• Improved treatment outcomes

• Leads to development of new / alternative approaches

• Increased sense of ownership of services

It is ethically desirable

But requires a cultural change

On the part of...

• The public

• Staff

‘Its about them doing what they are told, when they’re told and that’s it’

‘It is difficult when we’ve got this duty of care’

Recommendations

• Recognise need for public education and support

• Need to implement & monitor staff development strategies

• Include evaluation as part of user involvement

• Promote dissemination of research on UI