Principles and indicators of successful consumer involvement in NHS research: results of a Delphi study and subgroup analysis

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.     

Overcoming the challenges to consumer involvement in cancer research

Introduction Within the last decade, there have been many government initiatives to promote consumer involvement in research, especially in cancer. At the same time, the number and influence of consumer groups themselves have expanded. However, the organizational infrastructure necessary to facilitate consumer involvement has not been developed. Consequently, consumer involvement has tended to remain essentially localized and project driven, with no strategic or regional lead. Opportunities for involvement and identification of consumers The opportunities for consumers to influence the research process at each stage of the research process are identified. The different types of consumer involvement are also examined. Novel ways of identifying and recruiting consumers that have been adopted by one cancer network are discussed. The strategies used in one cancer network An organizational model designed by one cancer network for involving consumers in research is illustrated. Three innovations are examined in detail. First, how three open consumer conferences have increased awareness of research among service users. Second, the recruitment of consumers to sit on project steering groups and a committee that provides a strategic overview of current research. Third, the establishment of a Consumer Panel for Research where reimbursed, trained consumers are able to provide a considered consumer perspective in a range of settings. Conclusions Cancer networks need to take the lead in the development of an organizational infrastructure to facilitate consumer involvement. The model developed in Sheffield could be generalizable to other diseases and other health‐care settings.     

The impact of service user involvement in research

PURPOSE: There are many examples of consumer involvement in NHS research but few studies have examined the impact of this on service development or the research process. This study, involving service user and carer researchers working alongside professional researchers, aimed to examine the development of one service user and carer research group in a mental health Trust. DERSIGN/METHODOLOGY/APPROACH: The research involved a review of existing literature on consumer involvement in research, a review of user involvement in research in South West Yorkshire Mental Health NHS Trust, a survey of consumers and NHS staff in the Trust, and a skills audit and training needs analysis of consumers. FINDINGS: The study identified the range and extent of consumer involvement and the impact of this on consumers and the Trust. Service users and carers were involved in a range of projects, mainly on the level of consultation or collaboration. The benefits for consumers were principally on a personal level and included gaining knowledge and experience, improved sense of well-being, self esteem, and confidence. The benefit for the Trust was in having a service user perspective and focus. However, there is a tendency to omit service users from planning and setting priorities. PRACTICAL IMPLICATIONS: The study pointed to the need to build the evidence base on consumer involvement in research, particularly in terms of how consumers can impact on setting research priorities and selecting appropriate methods. It identifies the need for more training for consumers and for NHS staff and for a more coherent strategy. ORIGINALITY/VALUE: This article will be of value to anyone who is at the start or in the early stages of their journey of consumer involvement. It identifies some of the practical issues faced by consumers and staff in working collaboratively, but also points to the benefits for all the stakeholders.     

Consumer involvement in Quality Use of Medicines (QUM) projects – lessons from Australia

Background  

It is essential that knowledge gained through health services research is collated and made available for evaluation, for policy purposes and to enable collaboration between people working in similar areas (capacity building). The Australian Quality Use of Medicine (QUM) on-line, web-based project database, known as the QUMmap, was designed to meet these needs for a specific sub-section of health services research related to improving the use of medicines. Australia's National Strategy for Quality Use of Medicines identifies the primacy of consumers as a major principle for quality use of medicines, and aims to support consumer led research. The aim of this study was to determine how consumers as a group have been represented in QUM projects in Australia. A secondary aim was to investigate how the projects with consumer involvement fit into Australia's QUM policy framework.     

Consumer participation in health policy decisions: empowerment or puffery?

Many consumers in today's society have increased access to information about health and medical care through books, videotapes, audiotapes, the Internet, and television programming. However, consumers often are excluded from involvement in health policy decision making because it is believed that they do not have the necessary expertise. In this paper, the following will be discussed: (1) the historic role of consumer involvement in health policy decision making, (2) an overview of major barriers that consumers have encountered in health policy decision making, and (3) strategies for overcoming these barriers so that consumer empowerment can be enhanced when they serve on health policy panels.     

Consumer involvement in decisions about what health-related research is funded

OBJECTIVES: To consider whether, why and how research funders involve consumers in decisions about what health-related research is funded. METHODS: Postal survey and semi-structured interviews with UK funders of health-related research. RESULTS: Organisations that fund research have diverse goals and remits, and perceive themselves to be accountable in different ways and to different groups. They have a variety of reasons for involving consumers in decisions about what research is funded, but also a number of concerns about doing so-particularly about the ways in which consumer input might 'distort' the research agenda. Research funders use several types of decision-making structures and processes to identify and prioritise topics in which they want to invest and to select between research proposals. They involve consumers in these structures and processes in diverse ways. Little is known about the actual effects of this involvement, but the nature and extent of consumer influence on the research agenda is likely to be moderated by a number of factors, including the types of consumers involved, the particular structures and processes in which they are involved, the timing of their input and the different ways in which they are asked to contribute in relation to others. CONCLUSIONS: Diverse research funding organisations are now involving consumers in the various approaches that they take to identify and prioritise research topics and to decide which proposals they will fund. The future development of their activities could usefully be informed by careful consideration not just of consumer involvement but of the implications of the various structures and processes that shape research agendas. The appropriateness of particular forms of consumer involvement should be considered in the broader context of the features of the whole research funding system, including the values implicit within it.     

Status,challenges and facilitators of consumer involvement in Australian health and medical research

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.     

Consumer Participation in Planning Health Promotion Programmes: A Case Study Using the Nominal Group Technique

Current health policy in Australia requires consumer involvement in planning health promotion programmes. The literature highlights the need to involve the elderly in planning health promotion programmes. It is only by understanding their concerns, attitudes, beliefs and values that appropriate strategies can be developed. This paper describes how the Nominal Group Technique (NGT) was used to plan a health promotion programme's content and strategies for a Veterans' Quality of Life Project. The NGT group meetings yielded a wealth of easily collected, rank ordered, qualitative data from over 400 consumers. Additionally, consumer responses revealed issues not raised in the literature and, provided the foundation for continued participation and enthusiasm in subsequent health promotion activities. NGT proved to be an effective and efficient way to involve elderly consumers in planning health promotion programmes.     

Involving consumers in a needs-led research programme: a pilot project

Objectives To describe the methods used for involving consumers in a needs‐led health research programme, and to discuss facilitators, barriers and goals. Design In a short action research pilot study, we involved consumers in all stages of the Health Technology Assessment (HTA) Programme: identifying and prioritizing research topics; commissioning and reporting research; and communicating openly about the programme. We drew on the experience of campaigning, self‐help and patients’ representative groups, national charities, health information services, consumer researchers and journalists for various tasks. We explored consumer literature as a potential source for research questions, and as a route for disseminating research findings. These innovations were complemented by training, one‐to‐one support and discussion. A reflective approach included interviews with consumers, co‐ordinating staff, external observers and other programme contributors, document analysis and multidisciplinary discussion (including consumers) amongst programme contributors. Results When seeking research topics, face‐to‐face discussion with a consumer group was more productive than scanning consumer research reports or contacting consumer health information services. Consumers were willing and able to play active roles as panel members in refining and prioritizing topics, and in commenting on research plans and reports. Training programmes for consumer involvement in service planning were readily adapted for a research programme. Challenges to be overcome were cultural divides, language barriers and a need for skill development amongst consumers and others. Involving consumers highlighted a need for support and training for all contributors to the programme. Conclusions Consumers made unique contributions to the HTA Programme. Their involvement exposed processes which needed further thought and development. Consumer involvement benefited from the National Co‐ordinating Centre for Health Technology Assessment (NCCHTA) staff being comfortable with innovation, participative development and team learning. Neither recruitment nor research capacity were insurmountable challenges, but ongoing effort is required if consumer involvement is to be sustained.     

Involving consumers successfully in NHS research: a national survey

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.     

Involving older people in research: methodological issues

The policy imperative to increase public participation in health and social care research, planning and service delivery raises significant questions about optimum approaches, methods and the extent to which this policy can influence change in practice. This paper highlights the key policy literature on user involvement and participatory research methods to establish the context for a partnership research project exploring perceptions of risk in relation to falls from the perspectives of older people, carers, and health and social care professionals. The paper reports the methods used in developing user involvement in the research at a number of levels, including project management, and a consumer panel working alongside the research team and influencing the dissemination in local falls prevention strategies. The authors draw out the issues related to the context and method of involvement, and discuss the impact on research quality and local service development in health and social care.     

Consumer involvement in setting the health services research agenda: persistent questions of value

Interest in consumer involvement in health services research started to gain momentum at around the same time that the MRC Health Services Research Collaboration (HSRC) was established. Consumer involvement was not the focus of a formal research programme within the HSRC, but HSRC members took opportunities to conduct three projects relating to consumer involvement in research agenda-setting activities. These were: (1) a comparison of the focus of published research relating to the management of osteoarthritis of the knee with clinicians' and patients' ideas about research priorities; (2) a survey that examined the consumer involvement policies of public- and voluntary-sector organizations that fund health services research in the UK; and (3) a citizens' jury that was convened to develop priorities for research relating to primary health and social care in the Bristol area. This paper reviews the findings of these projects and highlights the continued need for attention to underlying values in the development and evaluation of future efforts to involve consumers in research agenda setting.     

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. 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.     

Health for all through research.

John F. Kennedy's vision of man on the moon by the year 1970 set a goal for technological research and development. The World Health Organization's vision of health for all by the year 2000 set a similar goal not only for health policy but also for health research. Drawing on the analogy between these goals, this paper first explores what health for all means as a policy goal. It calls for changes in most aspects of the health care system. In the European Region of the World Health Organization, 38 specific targets show how approaches to health problems, lifestyles, environment, health care and various support measures (e.g., planning, management and training) should be changed to reach the over-all goal. These changes should be based on sound scientific knowledge. Health for all therefore also calls for a health research policy and reorientation of research. The second part of the paper looks at the research implications of health for all. Assisted by the Regional Office of the World Health Organization, the European Advisory Committee for Health Research analysed the 38 targets to see what kind of research would help to achieve them. The result of this analysis were two publications: "Research Policies for Health for All" and "Priority Research for Health for All". The first volume explains why a country needs a health research policy. The second one identifies, target by target, research necessary to reach them. Translated into several languages, they have begun to influence national research policies. The third section of the paper describes the research priorities identified in the two research for health for all volumes. It also aims at showing their relevance for the European health research community. It finally discusses the prerequisites that the countries have to set up to make research for health for all possible. They include changes in the incentives for and financing of research, personnel development, research organization and communication between the researchers and decision-makers.     

Consumer involvement in cancer research: example from a Cancer Network

Background

The involvement of consumers and the general public in improving cancer services is an important component of health services. However, consumer involvement in cancer research is relatively unexplored. The objective of this study was to explore different ways of involving consumers in cancer research in one regional network.

Methods

Thames Valley Cancer Network Consumer Research Partnership (CRP) group was formed in 2009. The group consists of consumers and professionals to help in promoting consumer involvement in Cancer Research in the Thames Valley. This study evaluated the project of consumer involvement in cancer research in the Thames Valley from March 2010 to March 2011. We used different indices to judge the level of consumer involvement: number of projects involving consumers through the group, types of projects, level of involvement (ranged from consultation on research documents to collaborating in preparing grant applications) and the methods of involving consumers in cancer research.

Results

Fifteen projects were submitted to the CRP group during the 12‐month period studied. Of these, eight projects were clinical trials, three were qualitative research projects, two were patients'' surveys and two were non‐randomized interventional studies. Seven projects requested consumer involvement on patient information sheets for clinical trials. Of these seven applications, three also requested consumers'' help in designing research questionnaires and another three requested that consumers should be involved in their project management group. In addition, four projects involved consumers in the proposal development phase and another four projects asked for advice on how to increase trial recruitment, conduct patient interviews or help with grant applications.

Conclusions

The creation of the CRP and this audit of its activity have documented consumer involvement in cancer research in the Thames Valley. We have clearly shown that consumers can be involved in designing and managing cancer research projects.     

Consumer participation in Health Maintenance Organizations

Recent health legislation, particularly the Health Maintenance Organization Act, appears to invite the participation of consumers in the governance of health care programs. This represents an opportunity for the community organizer to influence the role of the consumer in health care systems. This paper examines federal policy relating to consumer participation, discusses resulting issues and dilemmas, and offers suggestions for programs to strengthen consumer participation in HMOs.     

Long‐term consumer involvement in cancer research: Working towards partnership

BackgroundMeaningful consumer involvement in health research is important. There are limited data on how to maintain long‐term consumer involvement.ObjectiveTo identify barriers and facilitators to meaningful long‐term consumer involvement in research.DesignSix semi‐structured interviews were conducted with members of the Primary Care Collaborative Cancer Clinical Trials Group (PC4) Community Advisory Group (CAG) and included the review of 40 supporting documents. Interviews and documents were analysed using inductive thematic analysis; the themes were mapped onto the domains of Cancer Australia''s National Framework for Consumer Involvement in Cancer Control.ResultsEquality, respect and feeling valued were facilitators to long‐term involvement. These elements were part of an overarching theme of organizational commitment. Creating balance, managing competing deadlines and integrating a consumer role with a personal life were key barriers to involvement. These themes mapped strongly to the National Framework for Consumer Involvement in Cancer Control domains of committed organizations, capable consumers, inclusive groups and shared focus.ConclusionResearch networks should reflect on several factors to maintain long‐term consumer involvement. Networks should aim to build a meaningful relationship, using clear communication and education, that reinforces the value and scope of a consumers contributions. We found that consumer education needs do not diminish over time and adequate skill development, support and feedback need to be on‐going. Creating regular opportunities for feedback and reflection are important to continue to meet best practice guidelines.     

Consulting about consulting: challenges to effective consulting about public health research

Objective  To understand barriers to obtaining input from consumers in developing public health research.
Methods  Documentation of a failed attempt at consumer consultation supplies information on barriers to effective involvement and conditions that must prevail to improve consultation.
Results  People are keen to be heard in the formulation of health research. However, competing demands and limited resources make it difficult for community groups to allocate scarce resources to consultation. Sometimes research issues may seem 'academic' and thus remote from the urgent priorities of the people with whom researchers wish to consult. Consultation may require more time than researchers on limited budgets can afford.
Conclusions  Despite a general public health commitment to involving consumers in research development, obstacles to consultation make it difficult to incorporate it into the research agenda.
Implications  Researchers and funding bodies will need to allocate resources to consumer consultation if it is to become the rule rather than the exception in public health research.