Patient recruitment | User involvement
User involvement
Most of the main funding bodies will expect research, where possible, to involve users or user groups in:
- Setting the strategic direction for research
- Identifying research priorities
- Designing research
- Overseeing the progress of research
- Helping to disseminate findings of research
Some researchers are sceptical about the value of involving users in research, viewing it as politically correct rather than a pragmatic step. However there are some distinct advantages, both ethically and practically:
- Patients, relatives and advocacy groups can generate ideas for outcome measures which are meaningful to them, but may have a very different slant to those selected by a clinician. For example, cancer trials may measure biochemical indicators or 5 year survival rates, whereas patients may have a stronger interest in quality of life measures. Reporting results in these terms may be more successful in achieving concordance with treatment or persuading patients to change to a new intervention.
- Users and members of the public can advise on how to recruit patients, particularly those from harder to reach communities. Poor patient information translation and failure to address the needs of black and ethnic minorities are two of the most common causes of failure to obtain ethical approval at first submission
Download Examples of user involvement in national and local research .
Resources for Researchers
Involving users in a meaningful way is not an easy task - experience suggests it can be time consuming and there may be difficulties overcoming the very different perspectives and approaches of professional and lay people. However, the examples given above illustrate that involving users has very tangible benefits.
In order to help researchers to work with users we would recommend the following resources:
Download Guidance notes on paying users involved in research.
Download Advice on researchers applying for funding.
Download Local contacts.
