DREaM event 3: User Involvement In Research: Making sense of a radical new development
Professor Peter Beresford OBE from Brunel University presented a workshop session discussing user involvement in research on Monday 30th January 2012 at the second DREaM workshop.
Professor Beresford provided a preview of this session in a short interview.
View this video on Vimeo.
Full text of the paper presented
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In his presentation, Professor Peter Beresford from Brunel University addressed the step changes caused by user involvement in research. He opened by emphasising that “user” is a complex word with many contested meanings. User involvement in research is becoming a high priority issue. This is something to be pleased about, but also a potential cause for concern. It presents challenges for us all as service users, researchers and policy makers, and raises personal, ethical and methodological issues.
Beresford identified three broad approaches to user involvement with research:
- User involvement research
- Collaborative or partnership involvement in research
- User controlled research
Users involvement can include commissioning research, controlling funding, carrying out research, collating the findings, publishing/disseminating the research, or deciding the scope of the research. Users may be consulted over the research design or actively shape it. As well as involvement in the research, service users have other roles related to the wider structure of the research environment. For example, they may purchase research from researchers.
Beresford discussed mainstream interest in service user involvement, citing NIHR’s Involve project as a benchmark. He noted that this interest has been signified by a number of developments. These include increasing demands for evidence of user involvement as a means of supporting research bids in many areas. He also observed that user involvement is often a means to an end: the end being emancipation. Underpinning much user controlled research is a need for a changed, and more equal, relationship between researcher and research subject. This is to empower individuals so they can have a greater say in developments and effect change.
Despite this, Beresford observed that mainstream interest in user involvement focuses mainly on feeding user knowledge into existing research arrangements. From wider experience we know that many service users see the movement towards increased user involvement as a mixed blessing. Common are complaints of being “all consulted out” and feeling that user consultations simply represent a “rubber stamping” activity.
Beresford asked whether there are there always gains from user involvement in research. He warned that researchers who may wish to involve users in their work may face ethical issues if they wish to ensure that their efforts go beyond tokenism. He also argued that garnering users’ views as a means of democratising research is inherently political, whereas more mainstream approaches tend to be abstracted as if potentially unrelated to any broader philosophy.
Beresford continued to critique the possible disadvantages of user involvement. He reflected that we can each speak for our own experience, but that this flies in the face of traditional research values such as objectivity: if individuals have direct experience of a service or issue, they may be seen as less reliable or valid data subjects because they are too close to the situation. This means, for example, if someone has experience of discrimination they could face further discrimination in being considered a less credible source of information on this issue. Whilst some distance is required for objective analysis, Beresford argued that the shorter the distance between direct experience and its interpretation, the less distorted, inaccurate and damaging the resulting knowledge can be.
Beresford concluded by asserting that we need more systematic and careful research into user involvement in research. Despite a clear requirement for more of of this, the size of the user involvement movement on the ground is modest. We need to augment the moral arguments that service users have been making about their involvement over the years. A critical response to these new ideas and its criticism should be developed so we can make some distinctions between different approaches and their value.
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