By Joanne Neale, Annabel Bouteloup,, Mel Getty, Casandra Hogan, Paul Lennon, Martin Mc Cusker, John Strang
If you have ever struggled to recruit participants to your trial, discovered that the results of your survey are compromised by missing data, wondered why interviewees in a qualitative study did not grasp the point of your questions or been disappointed that your research findings were not embraced enthusiastically by the treatment sector, then this editorial—on conducting research in collaboration with people who use substances—might be for you.
Terminology used to describe the concept we are discussing is confusing. We refer here to ‘collaborative research’, meaning researchers working ‘with’ members of the group being studied throughout the research process. We distinguish this from: (i) participation in research (where members of the group studied are involved as research participants), (ii) engagement in research (where information about research is shared with members of the group studied) and (iii) user-led research (where those directing the research are members of the group studied; e.g. people in treatment researching that treatment for themselves) [1,2].
The term ‘collaborative research’ is often used interchangeably with ‘service user involvement in research’, ‘patient and public involvement in research’ and ‘community involvement in research’. Language is crucial, and the best form of words to use will depend upon context and political perspective . For a treatment study, ‘patient involvement’ may seem appropriate, yet be offensive to those who do not consider themselves to be ‘sick’. ‘Service user’ may capture those in treatment, but exclude those who are not currently accessing services. Even the word ‘involvement’ is challenging, as it refers to a continuum of activities, e.g. advising, assisting and being equal partners in the research process [4,5].