What is the best approach?
I just finished adding 130+ articles from 2018 to INVOLVE’s online libraries of evidence of impact and good practice and noticed a common concern. It seems many researchers believe that one of the barriers to involving the public is not knowing ‘how’ to do it, often lamenting the lack of guidance and evidence around the best methods to use.
They might be waiting a long time.
I’d argue there aren’t ‘methods’ for involvement. Following a method would mean using the same approach every time and expecting consistent outcomes. For all the reasons I’ve discussed before, involvement doesn’t quite work like that in practice. The best approach depends on the context and especially the preferences of the particular individuals who are involved. For example, while lots of researchers set up advisory groups, some have found this simply isn’t an option for the people they want to involve – people with STDs for example, or young people with drug and alcohol problems.
This issue was perfectly illustrated by Andi Skilton’s experience of involvement at the BRC, Moorfields Eye Hospital. Andi involved a group of people who were deafblind and who all had very different preferences for communication, from lip-reading through to signing on their body. Andi and the lead researcher Mariya Moosajee learnt so much from this experience about how to support the involvement of people from this community, they thought it useful to share with other researchers. They wrote a journal article with suggestions for other researchers in this field.
But the paper came in for some strong criticism after its publication, from a young, deafblind person who thought the recommendations didn’t make sufficient mention of the use of technology. Andi’s group was made up of older people, who grew up before cochlea implants became available. They seemed to have less interest in, or familiarity with the use of IT, and possibly limited access. In the deafblind community, with what might seem to be common needs, there is huge variation among people’s preferences for the approach that would best support their involvement.
So it seems important not to make any assumptions about what approach will work best for whoever gets involved in a research project. The best ‘method’ might simply be to ask those individuals what they need, and to use whatever approach works best for them.