Participation - finding out what difference it makes
Practice site 9: The TRUE Project
1. Characteristics of service users involved
This case study is the evaluation of the experience of user participation as coresearchers on a research project. The evaluation report is called ‘A Story of Colliding Worlds’. The TRUE (Training in Research for Service Users Evaluation) Project was undertaken to scope training provision in the UK relevant to consumer involvement in research: to identify what elements are effective, and to develop a good practice guide. The co-researchers in the TRUE Project were adults who were mental health service users. All user-researchers were members of CAPITAL (Clients and Professionals in Training and Learning), a mental health service user organisation.
2. How service user participation within the organisation is ensured
The project was a three-way collaboration between Worthing & Southlands Hospitals NHS Trust, CAPITAL and the University of Brighton.
3. What policies on service user participation has the organisation formulated?
The evaluation focussed on user involvement in research.
4. How are service users supported?
The TRUE team comprised seven service users (members of CAPITAL, a mental health service user organisation), three project supervisors and a project coordinator. The three supervisors represented the three organisations involved in the collaboration: one researcher from Worthing & Southlands Hospitals NHS Trust, one researcher from the University of Brighton, and the third being the Director of CAPITAL.
5. How are the effects of participation monitored, audited, and evaluated?
The ‘Colliding worlds’ evaluation took place at the end of the TRUE Project. The TRUE research team requested the opportunity to reflect on their experiences of being involved in the project. This evaluation explored the experience of user participation as co-researchers and the purpose of the evaluation was to improve good participation of service users in research. A one-day event was arranged at the end of the project to bring everyone together in order to reflect upon the project. Five service users and three researchers attended. This was facilitated by an independent researcher. A second half-day was organised for those people who wished to take part in a further opportunity to share their views in more depth. Four people (one researcher and three service users) attended and one further service user submitted a response in writing.
6. A particular example of participation making a difference
The TRUE team produced an action pack that has been tried and tested. This pack was downloaded 9342 times in the first year.