… not an end in itself.
Researchers now have to report on any involvement in their project when they apply for funding or for ethical approval. Questions on the application form ask them for details. But what do they need to tell the funders and ethics committees?
Some work I’ve done recently with Jim Elliott at the HRA (The Health Research Authority, which oversees the work of ethics committees) suggests there’s a mismatch between what the form asks researchers about their involvement, and what would actually help the committee members do their job (see journal article). The question on the form seems only to check ‘what was done’. Researchers then describe the approach they used, who they worked with and the tasks that were carried out. It’s as if involvement is an end in itself, and we only need to confirm that it’s happened.
However the things that matter to ethics committees are exactly those aspects of research where involvement is known to make a big impact – the research design, the ethical acceptability of the research to participants, fully informed consent and assessing the importance of the research question. If researchers were to report on what they learnt from involvement and how this changed their proposal, this information could usefully inform the committee’s ethical review. Involvement would thus support the review process, and become a means to this particular end. The HRA is taking work forward to make these links clearer and stronger for everyone involved.
In other research contexts, the outcomes of public involvement might usefully support a very different kind of end. We still need a better understanding of how involvement can add value to organisations making different kinds of decisions, rather than thinking it to be generally a good thing! When we ask questions about involvement, we might need to ask about learning and specific outcomes, as well as checking it’s happened and has been done well…