Involving the public in NHS public health, and social care research: briefing notes for researchers (original) (raw)
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Health Expectations, 2004
Objective To obtain consensus on the principles and indicators of successful consumer involvement in NHS research.Design Consensus methods were used. An expert workshop, employing the nominal group technique was used to generate potential principles and indicators. A two-round postal Delphi process was used to obtain consensus on the principles and indicators.Setting and participants Participants were drawn from health, social care, universities and consumer organizations. A purposive sampling strategy was used to identify people who had experience and/or knowledge of consumer involvement in NHS research. Six researchers and seven consumers participated in an expert workshop. Ninety-six people completed both rounds of the Delphi process.Main outcome measures Consensus on principles and indicators of successful consumer involvement in NHS research.Results Eight principles were developed through an expert workshop and Delphi process, and rated as both clear and valid. Consensus was reached on at least one clear and valid indicator by which to measure each principle.Conclusions Consensus has been obtained on eight principles of successful consumer involvement in NHS research. They may help commissioners, researchers and consumers to deepen their understanding of this issue, and can be used to guide good practice.
Involving consumers successfully in NHS research: a national survey
Health Expectations, 2007
Objectives To investigate how far and in what way consumers are involved in NHS research.Background There is guidance from the UK Department of Health on involving consumers in research, but it is not known how these policies have been implemented.Design A national postal survey was conducted of 884 researchers selected randomly from the National Research Register, 16 researchers registered on the INVOLVE database and 15 consumers nominated by researchers who collaborated in the same research projects.Setting The survey participants were drawn from diverse settings including NHS organizations and universities.Participants Researchers and consumers collaborating in the same projects.Main outcome measures Details of how consumers were involved and the number of projects that met previously developed consensus-derived indicators of successful consumer involvement in NHS research.Results Of the 900 researchers who were sent a postal questionnaire, 518 responded, giving a response rate of 58%. Nine of the 15 consumers responded. Eighty-eight (17%) researchers reported involving consumers, mainly as members of a project steering group, designing research instruments and/or planning or designing the research methods. Most projects met between one and four indicators.Conclusions This national survey revealed that only a small proportion of NHS researchers were actively involving consumers. This study provides a useful marker of how far the Department of Health’s policy on consumer involvement in NHS research has been implemented and in what way.
Consumers as researchers - innovative experiences in UK National Health Service Research
International Journal of Consumer Studies, 2010
Consumer involvement is an established priority in UK health-and social-care service development and research. To date, little has been published describing the process of consumer involvement and assessing 'consumers' contributions to research. This paper provides a practical account of the effective incorporation of consumers into a research team, and outlines the extent to which they can enhance the research cycle; from project development and conduct, through data analysis and interpretation, to dissemination. Salient points are illustrated using the example of their collaboration in a research project. Of particular note were consumers' contributions to the development of an ethically enhanced, more robust project design, and enriched data interpretation, which may not have resulted had consumers not been an integral part of the research team.
Consumer involvement in health research: a review and research agenda
Health Policy, 2002
The involvement of consumers in health research is now Department of Health policy within the UK. Despite the existence of policy directives, there is a dearth of knowledge on the effects of such involvement. This paper critically reviews the state of our knowledge on this issue, and maps out a research agenda with the aim of stimulating systematic, empirical inquiry into consumer involvement in health research. The paper discusses definitions of 'the consumer'; considers why consumer involvement is believed to be important to health research; traces the development of the policy; analyses the epistemological and methodological implications of the policy; discusses the various levels of consumer involvement in research; and outlines the objections to the policy that have been put forward by clinicians and researchers. Four questions were identified during the review as being in need of theoretical and empirical attention: (1) how can consumer involvement in health research be further conceptualised? (2) how and why does consumer involvement influence health research? (3) how can the influence of consumers in health research be measured and evaluated? and what factors are associated with 'successful' consumer involvement in health research?
Health Policy, 2006
Consumer involvement in NHS research is Department of Health policy within the UK. Despite the existence of policy directives and guidance, until recently there has been no consensus among consumers and researchers about what it means to involve consumers successfully in NHS research. This paper discusses the value of consensus research in this policy area, and presents the detailed findings of a Delphi study carried out to reach consensus on principles and indicators of successful consumer involvement in NHS research. Study participants, comprising consumers, researchers and consumer-researchers, were identified using a purposive sampling strategy. Consensus was reached on eight clear and valid principles of successful consumer involvement in NHS research, with each principle having at least one clear and valid indicator. Subgroup analysis revealed few significant differences in how consumers, researchers and consumer-researchers rated the principles and indicators. The implications and limitations of the study are discussed. Further research is needed to assess: (1) the usefulness of the principles and indicators for differing models of consumer involvement, health research methodologies, and subject areas within health research; and (2) the impact of 'successful' consumer involvement on health research processes and outcomes.
Measuring something real and useful in consumer involvement in health and social care research
International Journal of Consumer Studies, 2011
Actively involving service users, patients and carers in the creation and development of health research in the UK has recently come under pressure to articulate why involvement is a good use of resources. This has led to a growing interest in creating ways to measure the impact of involving patients, service users and carers in research. However, there is a concern that fundamentally important issues about why we should meaningfully involve service users, patients and carers are missing from the current measurement discourses and activities undertaken in relation to measurement. This paper argues three distinct points, and is based on the experience of the authors working with Folk.us as well as other fields of involvement. Firstly, there should be an open and honest debate about what is meant by the need to measure and assess the effects of involving people in research, addressing issues such as who benefits from the measurement and assessment and why the involvement is being done. Secondly, if at the conclusion of the debate it is deemed necessary to measure and assess, there must be a full and frank discussion about what criteria are appropriate for the proper reporting of involvement activities. This discussion would need to include the less obvious activities that are crucial to active involvement, such as administrative tasks, and where such activities would sit within these criteria. Thirdly, we will consider when such criteria should be applied, at the beginning or end of projects and, indeed, whether one can categorize the 'beginning' or 'end' of involvement.
Health Research Policy and Systems, 2010
Background: The emergent international practice of involving consumers in health research is driven, in part, by the growing share of health research that can only be applied in and emerge from knowledge that is shaped by human values and societal contexts. This is the first investigation of its kind to identify the current prevalence, challenges, enabling factors and range of approaches to consumer involvement in health and medical research in Australia.
Researcher Perceptions of Involving Consumers in Health Research in Australia: A Qualitative Study
International Journal of Environmental Research and Public Health
There is growing recognition internationally of the importance of involving consumers, patients, and the public in research. This is being driven by political mandates for policies, funding, and governance that demand genuine and meaningful engagement with consumers. There are many potential benefits to involving consumers in research, including an increased relevance to patient needs, improved quality and outcomes, and enhanced public confidence in research. However, the current literature highlights that efforts to incorporate their contributions are often tokenistic and there is a limited understanding of the psychological factors that can impact researcher attitudes, intentions, and behaviours when working with consumers in research. To address this gap, this study conducted 25 semi-structured interviews with health researchers in Australia using the qualitative case study method. The study aim was to explore the underlying influences on researcher behaviour when involving consu...