Genuine user involvement: what does it look like?

Alison Faulkner

Mental health researcher & service user

Genuine user involvement…

Principles of service user involvement User involvement and the research

process What does it look like?

Examples The way forward…?

Principles for user involvement Clarity about the potential for involvement &

influence Respect for people’s views and experience Offer support and training User involvement policies & procedures An openness to change A base of support & accountability Offer payment & other incentives Ideas about negotiating differences Power and empowerment

Principles

Active partnership Doing research with or by people who use

services, not to, about or for them If research reflects the needs & views of people

who use services it is more likely to produce results that can be used to improve practice in social care services.

(INVOLVE)

Principles of service user involvement Clarity and transparency Empowerment Identity Commitment to change Respect Equal opportunities Theoretical approach Accountability

Faulkner 2005

Clarity and transparency Diversity Respect Flexibility Accessibility

SURGE 2005

Two examples…

1. Learning the lessons: a multi-method evaluation of dedicated community-based services for people with personality disorder.

2. Evaluation of Leeds survivor led crisis service.

‘Learning the Lessons’

Service user involvement at all stages and all levels – from design to dissemination

Project steering group, advisory group Service users as researchers, reviewers,

interviewers. Integrated research team-based approach

LL: What was good about it? Support for Researchers:

systematic debriefing; peer support telephone contact with research supervisors

Practical Arrangements Paid as consultants & expenses; Administrative support; e.g. information packs, accommodation

and travel arrangements Involvement and ownership of process as a whole

Design, interviewing, analysis and report writing Training and team work

Good quality research

LL: What was challenging?

Amount of work & co-ordination involved Expensive Time-consuming Personally challenging at times

Evaluation of Leeds Survivor Led Crisis Service Commissioned by the crisis service Service user led evaluation 4 service users recruited Designed and carried out evaluation together Report written together Fed back to staff and management group

(but not formally disseminated)

Crisis service evaluation (2)

A good experience for everyone Collaborative training Understanding of crisis Skills development Positive effects on service delivery Some uncomfortable findings Little external dissemination

The Research cycle…

Identifying

topicsPrioritising Commissioning

Designing research

Managing research

Undertaking research

Analysing & interpreting

Disseminating research

Evaluating research

Obstacles to genuine user involvement Identifying topics

Prioritising Commissioning

Designing research Managing research

Undertaking research Analysing & interpreting Disseminating

Evaluating

Government agendaMoney

Pharmaceutical companies

Research careers

Need for publications Concerns about quality

Attitudes: ‘We know best’

Keeping the space

Good service user involvement

Information and Communication

Respect

Accessibility

Flexibility

Honesty, transparency

Support

Training

Payment

Resources

Difference

Distress

Dissent

Keeping the space

New knowledge

and theory

Sharing th

e

‘research gaze’

Empowerment

Empowerment

Making change

happen

Evidence - and what

counts as evidence

Skills

Some references Faulkner, A. (2004) The Ethics of Survivor Research: Guidelines for the ethical

conduct of research carried out by mental health service users and survivors. Bristol: Policy Press on behalf of the Joseph Rowntree Foundation.

Service User Research Group England (2005) Guidance for Good Practice: Service user involvement in the UK Mental Health Research Network. London: UK MHRN.

Crawford, M et al (2007) Learning the lessons: A multi-method evaluation of dedicated community-based services for people with personality disorder. National Coordinating Centre for NHS Service Delivery and Organisation R&D, Department of Health.

Faulkner A, Gillespie S, Imlack S, Dhillon K & Crawford M (2008) Learning the lessons together. Mental Health Today Vol. 8 (1), February.

INVOLVE (2007) Public Information Pack. www.invo.org.uk INVOLVE (2004) Involving the public in NHS, public health, and social care research:

Briefing notes for researchers; as above. Direct Impact Service User and Carer Research Group (2004) Involving Service

Users and Carers in Audit, Evaluation and Research and Other Projects to Improve and Develop Services. South West Yorkshire Mental Health NHS Trust.