Jonathan Boote

What does it mean to involve consumers successfully in NHS research? A consensus study

Objective  To obtain consensus on the principles and indicators of successful consumer involvement in NHS research.

Critical perspectives on 'consumer involvement' in health research: Epistemological dissonance and the know-do gap

Researchers in the area of health and social care (both in Australia and internationally) are encouraged to involve consumers throughout the research process, often on ethical, political and methodological grounds, or simply as ‘good practice’. This article presents findings from a qualitative study in the UK of researchers’ experiences and views of consumer involvement in health research. Two main themes are presented. First, we explore the ‘know—do gap’ which relates to the tensions between researchers’ perceptions of the potential benefits of, and their actual practices in relation to, consumer involvement. Second, we focus on one of the reasons for this ‘know—do gap’, namely epistemological dissonance. Findings are linked to issues around consumerism in research, lay/professional knowledges, the (re)production of professional and consumer identities and the maintenance of boundaries between consumers and researchers.

Health researchers' attitudes towards public involvement in health research

Objective  To investigate health researchers’ attitudes to involving the public in research.

‘Talking the talk or walking the walk?’ A bibliometric review of the literature on public involvement in health research published between 1995 and 2009

To characterise the literature on public involvement in health research published between 1995 and 2009.

Can the impact of public involvement on research be evaluated? A mixed methods study

Background  Public involvement is central to health and social research policies, yet few systematic evaluations of its impact have been carried out, raising questions about the feasibility of evaluating the impact of public involvement.

Ethical Issues in the Use of In-Depth Interviews: Literature Review and Discussion

This paper reports a literature review on the topic of ethical issues in in-depth interviews. The review returned three types of article: general discussion, issues in particular studies, and studies of interview-based research ethics. Whilst many of the issues discussed in these articles are generic to research ethics, such as confidentiality, they often had particular manifestations in this type of research. For example, privacy was a significant problem as interviews sometimes probe unexpected areas. For similar reasons, it is difficult to give full information of the nature of a particular interview at the outset, hence informed consent is problematic. Where a pair is interviewed (such as carer and cared-for) there are major difficulties in maintaining confidentiality and protecting privacy. The potential for interviews to harm participants emotionally is noted in some papers, although this is often set against potential therapeutic benefit. As well as these generic issues, there are some ethical issues fairly specific to in-depth interviews. The problem of dual role is noted in many papers. It can take many forms: an interviewer might be nurse and researcher, scientist and counsellor, or reporter and evangelist. There are other specific issues such as taking sides in an interview, and protecting vulnerable groups. Little specific study of the ethics of in-depth interviews has taken place. However, that which has shows some important findings. For example, one study shows participants are not averse to discussing painful issues provided they feel the study is worthwhile. Some papers make recommendations for researchers. One such is that they should consider using a model of continuous (or process) consent rather than viewing consent as occurring once, at signature, prior to the interview. However, there is a need for further study of this area, both philosophical and empirical.

Consumer involvement in health research : Fact or fiction?

Consumer involvement is now firmly established as National Health Service (NHS) R&D policy. This study identified the range and diversity of current NHS research projects involving consumers within an NHS region, to investigate the extent to which the policy is being implemented. Trust R&D directors and managers were surveyed and the National Research Register scrutinized. Researchers were found to be involving consumers in research in less than a third of trusts in the region. Difficulties were encountered in categorising research activities and the level of consumer involvement, suggesting that more precision in describing consumer involvement in the research process is necessary. Researchers had concerns about the practicalities of involving consumers and expressed a need for more direction and resources. Makes recommendations for trust management to facilitate more active involvement of consumers in research.

“Saying is one thing; doing is another”: the role of observation in marketing research

In comparison to other techniques of data collection, observation rarely appears as a research methodology in the marketing literature: this may be because the technique is regarded as time‐consuming or as delivering data which lack the depth and qualitative richness of other research methodologies. In this article, the authors attempt to demonstrate that this is not the case. Far from providing superficial, “thin” information, the case forming the basis of this study demonstrates that observation delivers data which cannot be obtained using any other method. Considers the use of observation as an exploratory, qualitative, research technique and discusses when its use is appropriate. The main focus of the paper is a study carried out for Whitbread plc to highlight micro issues for consideration in the siting of different restaurant concepts.

Involving consumers successfully in NHS research: a national survey

Objectives  To investigate how far and in what way consumers are involved in NHS research.

Supporting public involvement in research design and grant development: a case study of a public involvement award scheme managed by a National Institute for Health Research (NIHR) Research Design Service (RDS)

It is good practice for the public to be involved in developing health research. Resources should be available for researchers to fund the involvement of the public in the development of their grants.