Consumer Involvement In Research Research Articles

Consumer involvement in health service research: a cross-sectional survey of staff in an Australian public hospital and health service.

ObjectiveConsumer involvement is when patients (their families, friends, and caregivers) work with researchers on research projects. While health services are expected to support consumer-researcher collaborations, conducive environments still need to be developed, with limited research into how Australian health services support this practice. This study explores current consumer involvement in research activity and staff perceptions at an Australian tertiary hospital and health service.MethodsResearch-active employees at a health service were invited to participate in an online cross-sectional survey. It assessed experience with and confidence in involving consumers in research, the perceived value of consumer involvement, and considerations related to challenges, facilitators, and solutions to enhance consumer involvement in health service research.ResultsAmong 83 respondents, including medical, nursing, and allied health professionals, 54 completed the survey. Approximately half had experience with involving consumers in research. Over 80% recognised that involving consumers enhanced research relevance. Identified barriers included challenges in finding (46.6%) and compensating (59.3%) consumers, as well as deficiencies in researcher skills, knowledge (32.2%), and time constraints (39%). Facilitators comprised access to experienced researchers and educational opportunities. Moreover, 87% advocated for increased support to involve consumers within health services, with the appointment of a designated consumer involvement officer deemed the most beneficial solution by 92.5% of respondents.ConclusionsWhile individual barriers inhibit consumer involvement in research, more prominent institutional factors such as financial and technical support may determine successful and meaningful collaborations. As health services evolve towards co-design models in research, the outcomes of this study will guide initiatives aimed at enhancing consumer involvement in the research process within Australian health services.

Exploring barriers and solutions to consumer involvement in health service research using a nominal group technique

BackgroundConsumer involvement in health research is when patients, their families and caregivers work with researchers on research projects. Despite the growing expectation for health services to facilitate the involvement of consumers in research, the practical integration of this approach is an ongoing process, with limited research conducted into how Australian health services can support this practice. This study explored consumer perspectives on the barriers and solutions to enabling consumer involvement in research within an Australian tertiary hospital and health service, and staff perspectives on the solutions to facilitating consumer involvement. A prior survey had identified barriers to consumer involvement from the staff perspective. The broad aim was to inform the development of a framework to help promote consumer involvement in research within the health service.MethodsA Nominal Group Technique (NGT) was utilised with groups comprised of health service consumers and staff. Three health consumers were co-researchers in the full life-cycle of this study and are included as authors.ResultsTen consumers and 14 staff participated across three sessions ranging from one to three hours. For consumers, barriers to their involvement were grouped into seven domains: (1) lack of connection with researchers/research projects, (2) low research literacy, (3) structural barriers, (4) lack of acknowledgement, (5) implementation challenges, (6) inadequate information provision, and (7) representation concerns. Solutions to enabling involvement were grouped into five domains: (1) support to connect with researchers/research projects, (2) adequate information provision, (3) incentive for involvement, (4) acknowledgement, and (5) balanced representation. Staff ideas for solutions were grouped into five domains: (1) support to connect with consumers, (2) support to involve consumers, (3) access to funds to remunerate consumers, (4) more time to involve consumers, and (5) staff training.ConclusionThrough an NGT methodology, this study delivered a nuanced comprehension of perspectives on involving consumers in research from both health service consumers and staff. These findings serve as a foundation for identifying strategies that foster enhanced and refined relationships between consumers and researchers, advancing the collaborative landscape in health research. The findings from this project offer valuable strategies for researchers to better engage consumers in research and for consumer groups to enhance their involvement. Additionally, these insights could be used by other health services to advocate for essential resources.

Meaningful consumer involvement in cancer care: a systematic review on co-design methods and processes.

Although the benefits of consumer involvement in research and health care initiatives are known, there is a need to optimize this for all people with cancer. This systematic review aimed to synthesize and evaluate the application of co-design in the oncology literature and develop recommendations to guide the application of optimal co-design processes and reporting in oncology research, practice, and policy. A systematic review of co-design studies in adults with cancer was conducted, searching MEDLINE, CINAHL, Embase, and PsycINFO databases and included studies focused on 2 concepts, co-design and oncology. A total of 5652 titles and abstracts were screened, resulting in 66 eligible publications reporting on 51 unique studies. Four frameworks were applied to describe the co-design initiatives. Most co-design initiatives were designed for use in an outpatient setting (n = 38; 74%) and were predominantly digital resources (n = 14; 27%) or apps (n = 12; 23%). Most studies (n = 25; 49%) used a co-production approach to consumer engagement. Although some studies presented strong co-design methodology, most (n = 36; 70%) did not report the co-design approach, and 14% used no framework. Reporting was poor for the participant level of involvement, the frequency, and time commitment of co-design sessions. Consumer participation level was predominantly collaborate (n = 25; 49%). There are opportunities to improve the application of co-design in oncology research. This review has generated recommendations to guide 1) methodology and frameworks, 2) recruitment and engagement of co-design participants, and 3) evaluation of the co-design process. These recommendations can help drive appropriate, meaningful, and equitable co-design, leading to better cancer research and care.

An End-User\u2019s Personal Perspective on the Need of Consumer Involvement in Research

There is growing understanding that the consumer’s voice in research needs to be stronger. Translational research studies need consumer inclusion in order to be effectively implemented. This narrative article provides the perspective of a Veteran with spinal cord injury (SCI) who is an active member of several study teams and serves as a Consumer Advocate, providing the voice of the person with SCI. Factors that drive people to develop new research ideas are considered. Consumer involvement offers helpful insight into project outcomes that are valuable to the end-user. It is also recognized that data can be interpreted in several different ways depending on the observer. Including the consumer in a research project enables another interpretation, creating a more complete evaluation. Participating in health research is becoming a new standard for persons with many different illnesses and diseases. Greater things are accomplished by physicians, healthcare scientists, engineers, and healthcare consumers interacting together to increase both the quality of research projects and the quality of life for everyone involved, especially the person with the disorder. There will be more acceptance of ideas or projects when consumers are involved from the early steps and learn how the process works from beginning to end.

Consumer involvement in research – parent perceptions of partnership in cerebral palsy research: a qualitative study

Purpose Identify perceptions of parents and caregivers of children with cerebral palsy about being consumer research partners and identify strategies to inform involvement of parents in cerebral palsy research. Materials and methods Twenty-two parents in New South Wales and Victoria (Australia) participated in this qualitative study. Seven interviews and three focus groups were completed. Interpretive description guided data analysis. Methodological rigor was enhanced through involving two consumer investigators in the research team, member checking, and multiple researchers completing data analysis and theme generation. Results Participants identified a range of factors that may influence their involvement in research partner roles. Main topics emerging from the data included “Research Is Better with Parents” and “Parents Benefit from Being Research Partners.” A third, “Parents as Research Partners,” contained the themes “Flexible Involvement,” “Starting Partnerships,” and “Building and Sustaining Partnerships.” Conclusion This study has provided a rich insight into how parents perceive and describe engaging as research partners. Parent-identified guidance will inform future partnerships aiming to enhance the quality of cerebral palsy research and outcomes for people with cerebral palsy and their families. The involvement of consumer investigators in this study was considered valuable for enhancing the quality and applicability of the research. IMPLICATIONS FOR REHABILITATION Parents believed that parent partnership in research has benefits for the research and for the consumers involved. Parents provided guidance about the importance of starting, building and sustaining relationships in involving parents as research partners. Understanding the parent context, investing in relationships and acknowledgement of, and recognition for, contributions were considered important for building and sustaining effective partnerships. Flexible approaches to supporting parents as research partners was considered necessary for effective partnership.

A snapshot of consumer engagement in clinical trials in Australia: results of a national survey of clinical trial networks and research organisations

BackgroundLittle is known about the extent, perceptions or experiences of consumers involved in clinical trials across Australia. The purpose of this National study was to better understand the activity and perceptions of clinical trial networks (CTNs), research co-ordinating centres and their consumers, around consumer involvement in clinical trials.MethodsCTNs and research co-ordinating centres who were members of the Australian Clinical Trials Alliance (ACTA), and consumers involved in the activities of these organisations, were invited to participate in online surveys. Surveys were completed between April and September 2018.Results80 respondents completed the surveys in full: 25 of 34 CTNs, 5 from 15 research co-ordinating centres, and included research investigators of 13 active trials, 10 completed trials. There were 27 consumer respondents. Consumers were involved in clinical trial activities across 19/25 (76%) of CTNs and 3/5 (60%) of research co-ordinating centres. Consumers were involved at all stages of the trial cycle. Despite this, only 8/30 (27%) of research organisations provided specific training to their employees or members on consumer involvement in research, and most did not have a specific policy or process relating to conducting consumer involvement in clinical trials. At the organisation level, barriers to consumer involvement in clinical trials included being unsure how to involve consumers effectively and systematically, difficulty in accessing consumers or lack of infrastructure and resources. At the consumer level, barriers included limited understanding of their roles, a lack of resources and training. Enablers included education, training and funding for both the research sector and for consumers. Almost all consumer respondents (25/27; 92%) would recommend the consumer role to other potential consumers, stating it was a valuable experience that led to knowledge exchange and learning about the research process.ConclusionsOver the last few years, consumer involvement in clinical trials has increased in Australia, but the scope of involvement varies across different research organisations, and therapeutic areas. Consumer involvement in clinical trials is valued by most that do it, however, there are opportunities to further foster and strengthen ongoing partnerships, for example by providing practical advice for researchers on how to best engage and involve consumers.

"I don't think we've quite got there yet": The experience of allyship for mental health consumer researchers.

Consumer participation in mental health services is an expectation articulated through mental health policy. Consumers as researchers could contribute significantly to mental health services. Barriers to participation are significant and limit consumer involvement. Enhanced understandings of collaborative relationships between consumer and nonconsumer researchers. Researchers from the health disciplines find value in consumer involvement in mental health research. These researchers can support and facilitate consumer research by being allies to consumer researchers. Understanding the role of allies is necessary to strengthen their capacity to support consumer researchers. Involving consumers in mental health research is likely to lead to improved practice. Introduction Australia and New Zealand mental health policy requires consumer participation in all aspects of mental health services. Systemic participation informs and improves the quality of mental health services. Collaboration with consumer researchers should be similarly required. Enhanced understandings of collaborations are needed. Aim To enhance understanding of the perspectives and experiences of nonconsumer researchers in working collaboratively with consumers as researchers. Method This qualitative exploratory study involved interviews with nonconsumer mental health researchers who have worked collaboratively with consumers in research. Interviews were conducted with participants from Australia and New Zealand. Results "Allyship" emerged as a major theme. This describes nonconsumer researchers playing an actively supportive role to facilitate opportunities for the development and growth of consumer research roles and activities. Seven subthemes were identified: establishing and supporting roles, corralling resources, guiding navigation of university systems, advocacy at multiple levels, aspiring to coproduction and consumer-led research, extending connections and partnerships, and desire to do better. Discussion Allyship may have an important role to play in the broader consumer research agenda and requires further consideration. Implications for practice Embedding meaningful consumer participation within mental health services requires active consumer involvement in research. Allies can play an important facilitative role.

Research priorities in health communication and participation: international survey of consumers and other stakeholders

ObjectiveTo identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in ‘health communication and participation’ (including such concepts as patient experience, shared decision-making and health literacy).SettingInternational.ParticipantsWe included...

How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers.

Coproduction of research between consumers of mental health services and nonconsumer mental health researchers is increasing. There is some research available describing consumer perspectives of this experience. However, there is a notable lack of research on other (nonconsumer) researcher experiences of and views about consumer involvement in coproduced research. A qualitative exploratory study was undertaken to examine perspectives of mental health researchers about consumer involvement in research. In-depth individual interviews were undertaken with 11 nonconsumer mental health researchers in Australia and New Zealand. Interview transcripts were analysed to identify major themes. There were three interacting themes: the salience of experiential difference, expanded learning, and enhanced research. The dynamic between different perspectives and learning had the effect of enhancing research across the spectrum of study phases and in ensuring research was of value to different groups. The findings emphasize the important contribution consumer researchers can make to mental health research by bringing their unique perspective and enhancing an environment of mutual learning. Findings also point to the need for foregrounding the numerous benefits of joint research between consumer and other researchers to enhance and improve clinical practice and the development of policy.

When Equity is Central to Research: Implications for Researchers and Consumers in the Research Team.

This paper is a response to our recognition that approaches to equity and consumer involvement in research differed in emphasis between our researchers and jurisdictions. Whilst we shared common aspirations we varied in our priorities between equity groups and methods to represent consumer interests. New Zealand has a historical focus on equity for indigenous Maori and shares with Canada concern about enduring inequalities that affect people’s lives.

What researchers think of involving consumers in health research.

Involving consumers in research enhances its quality and appropriateness, and is required within many research funding schemes. While the rationale for consumer involvement is understood, its implementation is unclear. The researcher investigated views of a group of Australia's leading researchers (n=38) about the role of consumers in their research using a brief survey administered at the Australia National Health and Medical Research (NHMRC) Translation Conference in 2014. Interpretive content analysis was used for data analysis. Respondents noted the importance of consumer involvement in the planning and design of research, to ensure its relevance to the community as end-users of research outcomes. Therefore, consumers were seen as central to research translation by the respondents. Many respondents perceived empathy for the experiences of others as a fundamental researcher skill. Despite strong acknowledgement of the benefits of consumer involvement in research, gaps exist between the rhetoric and practice of consumer involvement beyond consultative roles. Power over decisions made about research processes and ownership of research are continuing barriers to greater consumer involvement in research. Structural changes to how research is funded, evaluated and reported provide a means of addressing these gaps. NHMRC leadership is needed to promote these changes.

Consumer involvement in research using oral history: ‘What are people's experiences of health and well‐being in Halton?’

AbstractThe purpose of this paper is to describe a qualitative oral history case study that involved consumers in research and followed a collaborative approach in the north‐west of England. This study had two aims: (1) to increase local voluntary groups research capacity through active involvement in research; and (2) to explore the community's historical perceptions of health and well‐being. The research team included four lay researchers from local voluntary groups supported by an academic researcher. Data collection used semi‐structured interviews based on oral history life stories that focused on health and well‐being. Thematic data analysis and mind maps were used to create a collective narrative. This paper will provide a brief synopsis of the findings from the main themes of health and well‐being, and reflect on the process of consumer involvement in research using oral history. Outputs have included dissemination at a local and national level, increased knowledge and confidence in the research process, and involvement in other related initiatives, such as Local Involvement Networks, partnership working with local libraries and collaboration with the regional archivist.

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.

Consumer Involvement in Research

CMHSR has a long history of consumer involvement in research studies. These studies use the principles of Participatory Action Research (PAR), which is an approach to research in which consumers are included in all stages of a study.1 We discuss the research of Joanne Consumer involvement in research has become increasingly important, especially in mental health services research. CMHSR embraces the importance of consumers’ experience and knowledge in enhancing quality research. Consumers at CMHSR are involved in all aspects of the research process, from the conceptualization of a research topic to the dissemination of research findings. Consumers are involved in training, statistical analysis, interviewing, data entry, database management, and managing research studies. They also present and publish findings.

The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme

The value of consumer involvement in health services research is widely recognized. While there is a growing body of evidence about the principles of good consumer involvement, there is little research about the effect that involvement can have on the research. This evaluation assessed the level and impact of consumer involvement in the London Primary Care Studies Programme (LPCSP), all of whose individual projects had to demonstrate substantial involvement as a condition of funding. To evaluate consumer involvement in the LPSCP and understand what impact consumers had on the research process and outcomes. A multi-method case study approach was undertaken, using survey techniques, interviews, focus groups, observation and scrutiny of written documents. The overall data set comprised 61 questionnaires, 44 semi-structured interviews, 2 focus groups and 15 hours of observation of meetings. Eleven primary care-based research projects which together made up the LPCSP. An in-depth description of consumer involvement in the Programme was produced. Nine projects had consumers as co-applicants, four projects had been completed before the evaluation began and one was still ongoing at the time of the evaluation. Of the eight projects which have produced final reports, all met their aims and objectives. Consumers had had an additional impact in the research, in the initial design of the study, in recruitment of the research subjects, in developing data collection tools, in collecting the data, in analysis and disseminating the findings. Consumer involvement in National Health Service research is a relatively recent policy development and while there is an increasing amount of literature about how and why consumers should be involved in research, there is less evidence about the impact of such involvement. This evaluation provides evidence about the impact that consumers have not only on the research process but also on the outcomes of the research.

Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study

To assess the benefits of involving health-care users in diabetes research. For this qualitative case study, semi-structured interviews were conducted with researchers who had worked extensively with the group. During regular meetings of the Research User Group, members discussed their views of the group's effectiveness as part of the meeting's agenda. Interviews and discussions were transcribed, coded using N-Vivo software and analysed using constant comparative methods. Involvement of users in research was generally seen as contributing to effective and meaningful research. However, the group should not be considered to be representative of the patient population or participants of future trials. An important contributor to the group's success was its longstanding nature, enabling users to gain more insight into research and form constructive working relationships with researchers. The user-led nature of the group asserted itself, especially, in the language used during group meetings. A partial shift of power from researchers to users was generally acknowledged. Users' main contribution was their practical expertise in living with diabetes, but their involvement also helped researchers to remain connected to the 'real world' in which research would be applied. While the group's work fulfilled established principles of consumer involvement in research, important contributions relying on personal interaction between users and researchers were hard to evaluate by process measures alone. We demonstrated the feasibility, acceptability and effectiveness of this longstanding, experienced, lay-led research advisory group. Its impact on research stems from the continuing interaction between researchers and users, and the general ethos of learning from each other in an on-going process. Both process measures and qualitative interviews with stakeholders are needed to evaluate the contributions of service users to health research.

Patients and professionals as research partners: Challenges, practicalities, and benefits

Patient or consumer involvement in research is widely recommended, but although guidelines for researchers and patients have been produced, few practical experiences have been published and involvement remains fragile. This article reports the combined experiences of researchers and patients who are collaborating in rheumatology research, and the working model that has evolved. The article provides one example of a practical model for collaboration based on experience.

Can consumer research panels become an integral part of the cancer research community?

Summary The North Trent Cancer Research Network’s Consumer Research Panel (NTCRN CRP) was established in December 2001 by the Academic Unit of Supportive Care at the University of Sheffield, UK. In three years, the CRP has succeeded in nurturing a climate of sustainable consumer involvement within the NTCRN and this has become embedded in the culture of the network. Furthermore, the Panel have championed a sustainable development of consumer involvement in health and social care research by testing new ground and forging a new way of working between health professionals and patients and carers. This UK based CRP model has been held up as an example to other cancer networks, with new Panels being set up around the country to emulate its success. This paper describes the Sheffield model of patient and public involvement and using the eight key principles of successful consumer involvement in research, identified in a recent paper by Telford and colleagues (Telford, R., Boote, J., Cooper, C., 2004. What does it mean to involve consumers successfully in NHS research? A consensus study. Health Expectations, 7, 209–220), provides a useful framework for analysing the work of the Panel. This demonstrates how consumers and professionals can inform each other to work constructively to achieve impressive research results. The need for measurable outcomes to assess the impact and effect of consumer involvement is explored.

Consumer involvement in research

Consumer involvement in research

The impact of service user involvement in research

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. 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. 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. 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.