From passive subjects to equal partners

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Abstract

Background

The Department of Health and UK funding bodies have suggested that clinical academics work closely with mental health service users in research projects. Although there are helpful guidelines on the issues that have to be dealt with, there have been few examples of how this partnership research might be undertaken.

Aims

To illustrate the challenges in joint research projects.

Method

We subjected the process of user involvement to ten questions which arose in the development of a joint research project. The answers are an amalgamation of the user and clinical researcher considerations and are affected by hindsight.

Results

The involvement of the user-researcher changed the focus of the study and its design and content. More attention was paid to the intervention itself and the way in which it was delivered. This process increased the amount of time taken to carry out and write up the project as well as incurring financial costs for user consultation payments and dissemination.

Conclusions

This experience has clarified the contribution that users can make, for example by raising new research questions, by ensuring interventions are kept ‘user friendly’, and the selection of outcome measures.

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Most cited references 6

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Involving patients in clinical research

H Goodare, S Lockwood (1999)

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A controlled study of education about drug treatment in schizophrenia.

Paula MacPherson, Ieuan A. Hughes, B Jerrom (1996)

Various problems are associated with schizophrenia which may theoretically lead to impaired educability about treatment. The Understanding of Medication Questionnaire, designed to measure knowledge about treatment in schizophrenia, is described and presented. An educational programme based on a specially designed information booklet was developed. Sixty-four patients with DSM-III-R diagnosis schizophrenia were randomly allocated to groups receiving none (control), one session or three sessions of education. Pre-intervention low levels of knowledge about illness and treatment increased significantly immediately after a standard education session. Three education sessions led to significantly greater knowledge gain than one session. There was no significant change in the control group. Only the PANSS negative syndrome score independently and consistently explained a significant proportion of the education effect. The influence on educability of attitudes to education, impaired insight, cognitive impairment and other variables were considered. Three sessions of education led to significantly increased insight, but no change in compliance. Techniques appropriate for educating schizophrenic patients were discussed, and the value of involving patients in education emphasised. A series of patient education sessions is needed to consolidate learning, rather than a single informing process. The strong association between impaired learning and more severe negative schizophrenic syndrome emphasises the need for responsible prescribing of antipsychotic treatment in schizophrenia.