User Controlled Research: Its Meanings and Potential

Abstract

By Michael Turner and Peter Beresford , 2005. Shaping our Lives and the Centre for Citizen Participation, Brunel University1 ‘User Controlled Research: Its Meanings and Potential’ is a report of a project commissioned by INVOLVE (http://www.invo.org.uk) to find out more about the definition, nature and operation of user-controlled research. INVOLVE is a UK-based organization that promotes public involvement in National Health Service, public health and social care research. Although the report is focussed on user-controlled research in the UK, the nature of the report makes it relevant on an international level to a certain extent. Indeed the literature review and list of source material includes references from international and non-UK-based journals. User-controlled research is… well that is the point of this project. Service user approaches to research are a relatively recent phenomenon in health and social care, and there is still significant misunderstanding about what these approaches are and what they involve. Does this report address these misunderstandings and clarify the role of user-controlled research in health and social care? To a great extent, yes, but I do feel as though there is something missing. The report is divided into two documents: the final report (in excess of 100 pages) and the report summary (which can be downloaded from the INVOLVE website). Each of these is useful in different ways and helpful to different groups of people. The report summary is (obviously!) a summary of the whole project. It is quick and easy to read and gives a useful insight into the origins, definitions and principles of user-controlled research that would be helpful for those who do not know much about it and were too afraid to ask. It includes a one-page (eight bullet point) synopsis of Good Practice for User Controlled Research and a nice concise description of the barriers faced by user-controlled research. It is a good, user-friendly document (excuse the pun) that is well presented, and easily accessible over the Internet. The final report is more comprehensive and is a resource for those who are more interested in service user involvement in research, and is a very detailed source of information relating to User-controlled Research, including its origins, its relation to other types of service user research, definitions, good practice guidelines, the benefits of and barriers to user-controlled research and concerns for the future. Importantly, it clearly and helpfully discriminates between user-controlled research and research involving users. Even more importantly, the list of source material at the back of the report is one of the most valuable resources currently available for people interested in user-controlled research. The list includes helpful organizations, as well as a fantastic comprehensive list of literature, which is usefully grouped into key categories (including one category of examples of user-controlled research). What's missing? Well this study is very much focussed on the definitions and meaning that service users attach to user-controlled research. The authors readily admit that the project does not seek definitions and meanings from ‘conventional’ researchers and therefore may only represent ‘one side of the story’. But as this is about user-controlled research and not user involvement in research I do not see that not having the viewpoints of conventional researchers is a major drawback except that they may have more to say about the limitations of user-controlled research. Not addressing the limitations of user-controlled research in my opinion is a major drawback of the report. User-controlled research is important and has an important role in health and social care research. But it is not the ideal approach to all forms of research. There are types of research that require substantial infrastructure, expertise and accreditation. User involvement is possible but user control may not always be. Another limitation is that the report does not address the ambiguity between ‘service user’ researchers and ‘conventional’ researchers. When does one stop or start being the other? The report discusses the potential for service users to become ‘experts’ but ignores the fact that ‘conventional’ researchers are normal members of the public who are also service users. But as with every good project, this just shows that there is still work to do, and questions to be answered.