Uncovering the values that motivate people in relation to payments for involvement in research

2014 ◽  
Vol 18 (1) ◽  
pp. 17-20 ◽  
Author(s):  
Teresa Roca ◽  
Peter Bates
Keyword(s):  
Factor Analysis ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Unique Contribution ◽  
Content Type ◽  
East Midlands ◽  
Health And Social Care ◽  
Participation In Research ◽  
Practical Implications

Purpose – The purpose of this paper is to contribute to response to the 2013 health and welfare reform in the UK by looking specifically at how health research stakeholders in the East Midlands perceive reimbursements for their participation in research. Design/methodology/approach – In keeping with the government research agenda, a survey was distributed to patient and public involvement in research volunteers and other stakeholders in the East Midlands region. In total, 251 useful returns were statistically analysed using descriptive and frequency based statistics and factor analysis. Principal Component Analysis and Varimax Rotation with Kaiser Normalisation were used. This was supplemented by thematic analysis of the content of open questions. Findings – 29 per cent of respondents reported experience with payments and/or reimbursement of expenses for participation in research. Three main factors emerged from the exploratory factor analysis indicative of the values that underpin participants motivation to participate in research. These were “as an opportunity for self-development”, “volunteering”, and “work and market forces”. This revealed that local organisations were somewhat out of step with stakeholders motivations. Research limitations/implications – It is a small study, and therefore has limited power to predict. Wider societal factors were not taken into account and may also impinge on the responses given, especially if respondents are dependent on welfare benefits and vulnerable to shifting community attitudes. Practical implications – This study has got practical implications for policy makers, ethics committees, agencies promoting patient and public involvement, and research organisations. It should influence the design of health research, allow systems to be aligned with individual motivation, maximise recruitment to research and enhance the validity of research findings. Social implications – Genuine coproduction will enhance the quality of health and social care research, and will be strengthened by payment systems that respond the ethical position of participants rather than simply organise around welfare benefit regulations. This study also has the potential to influence guidance from major funders of health research. Originality/value – This study offers an unique contribution into a neglected, complex yet significant area of research practice.

Developing and evaluating guidelines for patient and public involvement (PPI) in research

2015 ◽  
Vol 28 (2) ◽  
pp. 141-155 ◽  
Author(s):  
Katherine Pollard ◽  
Anne-Laure Donskoy ◽  
Pamela Moule ◽  
Christine Donald ◽  
Michelle Lima ◽  
...  
Keyword(s):  
Service User ◽  
Public Involvement ◽  
Good Practice ◽  
Patient And Public Involvement ◽  
Service Users ◽  
User Research ◽  
Content Type ◽  
Research Guidelines ◽  
Health And Social Care ◽  
Service User Research

Purpose – A growing literature reports the benefits and challenges of patient and public involvement (PPI) in research; nevertheless, understanding PPI in research design remains under-developed. The purpose of this paper is to report learning experiences from involving service users as research partners in two projects that developed and evaluated guidelines for good practice in this regard. The main objective was to evaluate these guidelines. Design/methodology/approach – PPI research guidelines were developed through five workshops involving service users/patients, carers, health and social care professionals/managers and academics. Using a participatory qualitative approach, these guidelines were evaluated through mapping them against the two service user research partners’ experience within another project. Findings – The guidelines were found to be fit for purpose, as they allowed problems to be easily identified and reassurance that required standards were being met. Both academic and service user research partners learned and gained relevant skills. Two service user research partners also found their daily living skills unexpectedly enhanced by project participation. Originality/value – The PPI guidelines, the authors developed were produced by consensus involving several stakeholders. Service users involved as research partners in the project experienced unanticipated personal benefits.

Making it clear and relevant: patients and carers add value to studies through research document reviews

2016 ◽  
Vol 20 (1) ◽  
pp. 36-43 ◽  
Author(s):  
Kristina Staley ◽  
Joanne Ashcroft ◽  
Lisa Doughty ◽  
George Szmukler
Keyword(s):  
Public Involvement ◽  
Ethics Committees ◽  
Patient And Public Involvement ◽  
Ethical Review ◽  
Evaluation Team ◽  
Content Type ◽  
Regulatory Processes ◽  
Health And Social Care ◽  
Set Up ◽  
Research Document

Purpose – The National Institute of Health Research MHRN established the Feasibility and Support to Timely recruitment for Research (FAST-R) service in 2011, to provide rapid patient and carer feedback on research documents, prior to ethical review. The aims were to improve the feasibility of studies, to speed up regulatory processes and enhance study set up and completion. The purpose of this paper is to explore whether and how the FAST-R service benefits the review process. Design/methodology/approach – An independent evaluator analysed the comments made by FAST-R members on 85 studies over the past 3.5 years. The evaluation team reflected on the nature of these comments and the implications for future practice. Findings – The FAST-R members’ comments fell into seven categories relating to: the quality of the information, the informed consent process, care and protection of participants, practical arrangements for participants, data protection and confidentiality, recruitment and research design. Based on the evaluation team’s experience of research document review, some of these comments were similar to those made by ethics committees. In other cases, the FAST-R Panel provided a different kind of input by identifying concerns specific to service users and carers. Practical implications – Patient/carer involvement in reviewing research documents brings added benefits to existing processes because their views are informed by their knowledge and experience. They are able to question assumptions and highlight concerns that people lacking their perspective might otherwise miss. These findings suggest that patient/carer involvement should form an integral part of ethical review, and that the FAST-R model might be usefully applied to other areas of health and social care research. Originality/value – This original work adds value to the practice of patient and public involvement in research.

scholarly journals Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Julia Jones ◽  
Marion Cowe ◽  
Sue Marks ◽  
Tony McAllister ◽  
Alex Mendoza ◽  
...  
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Short Form ◽  
Collaborative Study ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Missed Opportunities ◽  
The Public ◽  
Research Publications ◽  
Health And Social Care

Abstract Background Patient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that PPI improves the quality, relevance and outcomes of research. There has been a growth in research publications that describe PPI in the research process, but the frequency and detail of PPI reporting varies considerably. This paper reports on a collaborative study that aimed to describe the extent of PPI in publications from research funded by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East of England (EoE), part of the National Institute of Health Research (NIHR) in England (2014–2019). Methods A descriptive study of all research publications (1st January 2014 to 31st October 2017) funded by the NIHR CLAHRC EoE. Members of the Public Involvement in Research group (PIRg), at the University of Hertfordshire, were actively involved, with four PIRg co-researchers. We used an internationally recognised reporting checklist for PPI called the GRIPP2 (Guidance for Reporting Involvement of Patients and the Public, Version 2) to guide the reviewing process. Results Out of 148 research papers identified, 16 (14%) reported some aspect of PPI activity and were included for review. Ten of the publications (63%) acknowledged the contributions of PPI individuals and/or groups and five had PPI co-authors. There was considerable variation in the PPI reported in the publications, with some ‘missed opportunities’ to provide detail of PPI undertaken. The perspectives of the co-researchers shaped the reporting of the results from this study. The co-researchers found the GRIPP2-SF (short form) to be useful, but the GRIPP2-LF (long form) was considered over complicated and not user-friendly. Conclusions This is one of the first studies to involve lay co-researchers in the review of PPI reporting using the GRIPP2 reporting checklists (GRIPP2-SF and GRIPP2-LF). We make recommendations for a revised version of the GRIPP2-SF, with clearer instructions and three additional sections to record whether PPI is reported in the abstract or key words, in the acknowledgements section, and whether there are PPI co-authors. We also recommend the provision of training and support for patient and public peer reviewers.

scholarly journals Involving public and patients in research

2014 ◽  
Vol 96 (5) ◽  
pp. 148-149 ◽  
Author(s):  
V Kasivisvanathan ◽  
Kate Williams
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Social Care ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Care Services ◽  
Health And Social Care

What does patient and public involvement (PPI) in research mean? The National Institute for Health Research (NIHR) defines ‘patient and public’ as patients, potential patients, their carers, people who use health and social care services, and organisations that represent people who use these services. 1 The term ‘involvement’ refers to an active partnership between patients and public and researchers in the research process.

Public involvement in public health research

2017 ◽  
Vol 16 (3) ◽  
pp. 123-126 ◽  
Author(s):  
Julian Ashton
Keyword(s):  
Public Health ◽  
Health Research ◽  
Design Methodology ◽  
Patient Involvement ◽  
Public Involvement ◽  
Public Health Research ◽  
Content Type ◽  
Problems And Solutions ◽  
Practical Implications ◽  
Public And Patient Involvement

Purpose The purpose of this paper is to examine the progress in public and patient involvement (PPI) in public health research, and identify the relevant problems and solutions. Design/methodology/approach To explore the advantages and drawbacks of PPI in health research, drawing on studies which have looked at the barriers to effective PPI, as well as the benefits to all parties. Findings Guidelines have emerged from recent research for the process of PPI throughout a project; however different schemes for PPI will apply, depending on the context. Research limitations/implications There are not many well-researched studies into PPI in this area. A frequent limitation in research projects is that there is not sufficient provision for PPI. The implication is that more time and funding should be made available for well-planned PPI. Practical implications Researchers need to find more ways for involvement, as well as optimising current methods. Social implications The growth of PPI has opened up channels of communication and developed new roles for people in research, who would not otherwise be involved. Originality/value The paper draws together a range of studies in an original way, as well as using some unpublished material. It is an area of current interest.

scholarly journals Developing involvement during a programme of recovery research

2016 ◽  
Vol 11 (4) ◽  
pp. 244-255 ◽  
Author(s):  
Mike Slade ◽  
Premila Trivedi ◽  
Ruth Chandler ◽  
Mary Leamy
Keyword(s):  
Lived Experience ◽  
Design Methodology ◽  
Public Involvement ◽  
Empirical Evaluation ◽  
Research Programme ◽  
Patient And Public Involvement ◽  
Advisory Group ◽  
Content Type ◽  
Practical Implications ◽  
Practical Recommendations

Purpose The purpose of this paper is to consider the process of working with a Lived Experience Advisory Group (LEAP) and its outcomes in REFOCUS, a large five-year programme of recovery research. Design/methodology/approach Narrative reflections on the experience of working with LEAP were collected from five members and the chair of LEAP, two REFOCUS researchers and the principal investigator. These were synthesised to show both the process and outcomes of LEAP involvement in REFOCUS, and how involvement evolved organically over time. Findings Individual reflective accounts showed how working with LEAP impacted (to a greater or lesser extent) on each individual involved in the process, providing new insights and influencing, to varying degrees, the way in which they then worked with LEAP. Synthesis of the reflections showed how these changes impacted organically on LEAP’s process of involvement, with a shift in LEAP’s role from being purely consultative/advisory towards one which was much more about co-production, with LEAP pro-actively contributing to some aspects of REFOCUS in the later stages of the study. Practical implications The authors stress the importance of considering process as well as outcomes in patient and public involvement, and make practical recommendations for improving both in future programmes of research. Originality/value This is the first empirical evaluation of user and carer involvement and its development during a large recovery research programme.

scholarly journals Reaching consensus on reporting patient and public involvement (PPI) in research: methods and lessons learned from the development of reporting guidelines

BMJ Open ◽  
2017 ◽  
Vol 7 (10) ◽  
pp. e016948 ◽  
Author(s):  
Jo Brett ◽  
Sophie Staniszewska ◽  
Iveta Simera ◽  
Kate Seers ◽  
Carole Mockford ◽  
...  
Keyword(s):  
Public Involvement ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Lessons Learned ◽  
Reporting Guidelines ◽  
Consensus Development ◽  
Face To Face ◽  
Three Phase ◽  
Health And Social Care ◽  
The Impact

IntroductionPatient and public involvement (PPI) is inconsistently reported in health and social care research. Improving the quality of how PPI is reported is critical in developing a higher quality evidence base to gain a better insight into the methods and impact of PPI. This paper describes the methods used to develop and gain consensus on guidelines for reporting PPI in research studies (updated version of the Guidance for Reporting Patient and Public Involvement (GRIPP2)).MethodsThere were three key stages in the development of GRIPP2: identification of key items for the guideline from systematic review evidence of the impact of PPI on health research and health services, a three-phase online Delphi survey with a diverse sample of experts in PPI to gain consensus on included items and a face-to-face consensus meeting to finalise and reach definitive agreement on GRIPP2. Challenges and lessons learnt during the development of the reporting guidelines are reported.DiscussionThe process of reaching consensus is vital within the development of guidelines and policy directions, although debate around how best to reach consensus is still needed. This paper discusses the critical stages of consensus development as applied to the development of consensus for GRIPP2 and discusses the benefits and challenges of consensus development.

Examining the influences of perceived exclusivity and perceived rarity on consumers' perception of luxury

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Xujia Wang ◽  
Billy Sung ◽  
Ian Phau
Keyword(s):  
Factor Analysis ◽  
Confirmatory Factor Analysis ◽  
Design Methodology ◽  
Marketing Strategies ◽  
Content Type ◽  
Product Categories ◽  
Theoretical Support ◽  
Confirmatory Factor ◽  
Luxury Market ◽  
Practical Implications

PurposeThe purpose of this study is to investigate how exclusivity and rarity (natural versus virtual) influence consumers' perceptions of luxury. Further, it examines whether exclusivity and rarity can function as distinct marketing strategies in today's luxury market environment.Design/methodology/approachOnline questionnaires were administered by adapting developed scales from prior research. Research stimuli were chosen from three luxury categories including bags, wine and cruise. Confirmatory factor analysis and multiple regressions were used to test the hypotheses.FindingsThe results confirmed that exclusivity, natural rarity and virtual rarity were perceived as relatively distinct constructs among our sample. Findings also highlighted that perceived natural rarity (PNR) has consistently emerged as a positive and significant contributor to consumers' perceptions of luxury across all three luxury categories. The influence of perceived exclusivity (PE) on perceptions of luxury has also shown to be significant for two product categories (luxury bag and luxury wine), whereas perceived virtual rarity (PVR) did not show any significant effects across all three categories.Practical implicationsThe results indicate that consumers perceive natural rarity, virtual rarity and exclusivity as relatively distinctive marketing strategies. This suggests that luxury businesses can adopt each strategy independently to achieve desired marketing outcomes.Originality/valueThis study offers theoretical support for the proposition that exclusivity and rarity may have different functions in luxury marketing implementations. It provides empirical evidence showing the distinctiveness of perceived exclusivity and perceived rarity, which have not be done in previous research.

scholarly journals The importance of a room with a view for older people with limited mobility

2018 ◽  
Vol 19 (4) ◽  
pp. 273-285 ◽  
Author(s):  
Charles Musselwhite
Keyword(s):  
Older People ◽  
Design Methodology ◽  
Social Care ◽  
Structured Interviews ◽  
Content Type ◽  
Limited Mobility ◽  
Human Element ◽  
Health And Social Care ◽  
Vantage Points ◽  
Practical Implications

Purpose The purpose of this paper is to examine how older people who are almost entirely housebound use a view from their window to make sense of the world and stay connected to the outside space that they cannot physically inhabit. Design/methodology/approach Semi-structured interviews with 42 individuals were carried out who were living at home, were relatively immobile and had an interesting view outside they liked from one or more of their windows. Findings The findings suggest that immobile older people enjoy watching a motion-full, changing, world going on outside of their own mobility and interact and create meaning and sense, relating themselves to the outside world. Practical implications Findings suggest that those working in health and social care must realise the importance of older people observing the outdoors and create situations where that is enabled and maintained through improving vantage points and potentially using technology. Originality/value This study builds and updates work by Rowles (1981) showing that preference for views from the window involves the immediate surveillance zone but also further afield. The view can be rural or urban but should include a human element from which older people can interact through storytelling. The view often contains different flows, between mundane and mystery and intrigue, and between expected and random.

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