Value Of Patient And Public Involvement Research Articles

‘A commitment to Equality, Diversity and Inclusion’: a conceptual framework for equality of opportunity in Patient and Public Involvement in research

Many research institutions and funders have recently stated their commitment to actively support and promote ‘Equality, Diversity and Inclusion’ (EDI) in various aspects of health research including Patient and Public Involvement (PPI). However, translating this commitment into specific research projects presents significant challenges that existing approaches, practical guidelines and initiatives have not adequately addressed. In this paper, we explore how the lack of clear justifications for the EDI commitment in existing guidelines inadvertently complicates the work of those involved with PPI and we stress the need for conceptual clarity for any EDI effort to yield meaningful results. Our focus centres on the first principle of the EDI discourse, ‘equality’, particularly in the form of ‘equality of opportunity’ as outlined in current guidance provided by the National Institute of Health Research in the United Kingdom. We examine challenges related to justifying and implementing a general, unspecified commitment to equality of opportunity and explain that this reflects a lack of consensus regarding the moral value of PPI in research – a profound problem that remains unaddressed. We then discuss how the presence of several opposing moral perspectives on PPI, makes determining the most appropriate way of addressing barriers to involvement complex and controversial, raising ethical implications for the work of health researchers, PPI specialists and coordinators. Finally we make suggestions on how future research can enrich the concept of ‘equality of opportunity’ in PPI and improve practice. While our primary focus is on the NIHR, a strong advocate of PPI in research, this analysis will point to normative and ethical considerations that may be relevant to other research institutions and funding organisations aiming to promote equality of opportunity in their public and patient involvement strategies.

Evaluating the benefit of early patient and public involvement for product development and testing with small companies.

There is a growing understanding of the benefits of patient and public involvement (PPI), and its evaluation, in research. An online version of the CUBE PPI evaluation framework has been developed. We sought to use the CUBE to evaluate the value of early PPI with two small healthcare companies during product development. Contributors were recruited online and had lived experience of either type 1 diabetes or obesity. Two1-hsessions were run with a company developing a smartphone application to manage diabetes (DEE-EM): one with young people (YP; n = 5) and one with parents (n = 7). Two 1-hsessions were run with a company developing a weight-loss product, both with adults (n = 7 in each session). Sessions were facilitated by an independent University researcher and attended by company representatives, who presented their product. One facilitator led the evaluation of the session by giving a demonstration of the CUBE and asking simple questions in the YP session. A high proportion of contributors completed the CUBE (80.5% DEE-EM; 93% Oxford Medical Products). Responses were positive to all four CUBE dimensions (in italics). Contributors felt there were diverse ways to contribute to the sessions, and that they had a strong voice to add to the discussion. Balance was achieved regarding whose concerns (public or company) led the agenda, and contributors felt that both companies would make changes based on the discussion. The supportive attitude of both companies resulted in most contributors feeling comfortable participating in PPI sessions with the industry, while recognising the profit-making aspect of their work. PPI with small healthcare companies is both feasible and worthwhile. The CUBE framework facilitated the evaluation of the interaction between experts in different knowledge spaces. We provide recommendations for future projects, including considerations of who should participate and the level of implicit endorsement of the product that participation implies. People with lived experience of type 1 diabetes or obesity were invited to contribute to one of four PPI sessions, which they then evaluated. One contributor agreed to contribute to the analysis of the evaluation data and interpretation and preparation of the manuscript.

Key stakeholders\u2019 views, experiences and expectations of patient and public involvement in healthcare professions\u2019 education: a qualitative study

BackgroundPatients and the public have an integral role in educating healthcare professionals. Authentic partnerships between higher education institutions and patients and the public are essential. This study examined key stakeholders’ views, experiences and expectations of patient and public involvement (PPI) including the nature of the involvement and requirements for partnership.MethodsPurposive and snowball sampling was used to recruit key stakeholders, including patients and members of the public involved in health professions education, and academics interested in PPI. Focus groups were held with patient and public participants, providing the opportunity to gain multiple perspectives in an interactive group setting. Academics with an interest in PPI were interviewed using a semi-structured approach. Topic guides were derived from the literature and piloted prior to data collection. Focus groups and interviews were conducted until data saturation was achieved. All data was audio-recorded, transcribed, anonymised and thematically analysed.ResultsFour focus groups were conducted involving 23 patient and public participants (median number of participants per focus group of 6). Nine interviews were conducted with academics (face-to-face [n = 8] or by telephone [n = 1]). Five themes were developed: previous experiences of PPI, training requirements, challenges/barriers to PPI, facilitators of PPI and future ideas for PPI. All participants held positive views of the value of PPI. Participants had mixed views in terms of training, which depended on the level of involvement, but similar views on the challenges and facilitators for PPI in education. There was agreement that PPI requires institutional vision and investment to build strong relationships and a culture of PPI best practice.ConclusionsThere is a need for more strategic and formal involvement of patients and the public to ensure that that PPI becomes sustainably embedded in health professions education.

Reflections on my role as a mental health service user co-applicant in a randomized control trial

This is not a research paper but a personal and collective reflection of patient and public involvement (PPI) for the LIGHTMind 2 randomized control trial (www. isrctn. com/ISRCTN13495752). This trial compares two guided self-help psychological interventions for depression, and is delivered in the UK NHS Improving Access to Psychological Therapy services. The paper is the result of my reviewing our PPI 18 months into the trial. The PPI includes myself as a research team member and co-applicant, with lived experience of depression, mindfulness and cognitive behaviour therapy. There is a Lived Experience Advisory Panel of six people with lived experience of depression or mindfulness, who advise the researchers. Two people with lived experience of mental health difficulties and knowledge of PPI attend the Trial Steering Committee. This paper includes comments from some of the other people with lived experience and from researchers involved in the trial, included as co-authors. I offer the Johari window (Luft, 1970) and the 4Pi National Involvement Standards (NSUN, 2018) as a way of positioning the value of PPI. Developing relationships within PPI is identified as a way of moderating the fear that some people experience as they work with researchers. I describe the importance of principles that incorporate explicit statements about the value of PPI.

Patient and public involvement in doctoral research: Impact, resources and recommendations.

Background and aimPatient and public involvement (PPI) has potential to enhance health‐care research and is increasingly an expectation, particularly for many funding bodies. However, PPI can be tokenistic, which may limit this potential. Furthermore, few studies report PPI processes and impact, particularly in doctoral research studies, which are seldom reported in peer‐reviewed papers. The aim of this paper was to explore the impact of PPI on two health‐related doctoral research studies and identify how PPI could be used meaningfully at this level.MethodThe PPI processes included (a) involvement of two ‘Research Buddies’ who informed the research design and ensured implementation of a booklet intervention was feasible for family carers, (b) data analysis workshops with ‘Research Buddies’ to identify emerging themes from practitioner interviews, (c) public and stakeholder involvement who informed data collection tool design, and the design of an intervention to help people with obesity who attend weight loss groups.FindingsThe application of PPI enhanced both doctoral studies by assisting data analysis; problem solving and improving recruitment rates; improving the usability and appeal of data collection tools and interventions; and developing implementation strategies. Patient and public involvement was considered a rewarding experience for both researchers and PPI contributors.ConclusionThis paper demonstrates the value of PPI in doctoral research in relation to its impact on research processes, researchers and contributors. We also present recommendations on how PPI could be incorporated into future doctoral research, including resources required, planning PPI processes and involving PPI contributors in all stages of research.

A research note on the benefit of patient and public involvement in research: The experience of prostate cancer patients regarding information in radiotherapy

AimTo explore the inclusion of patient and public involvement (PPI) in a qualitative study on the experiences of men with prostate cancer regarding information in radiotherapy. MethodThe application of PPI to one doctoral research study is explored with respect to two perspectives: firstly, involvement of a patient reference group who informed the research design and materials, and secondly, the involvement of a public involvement in research group (PIRg) in advising the researcher during the design process. DiscussionPPI is recognised as an important component of contemporary health research. PPI is becoming a common and essential requirement for high quality research projects and yet literature exploring or reporting the involvement and influence of PPI is sparse. Consideration is given to the national PPI landscape that has shaped public involvement in health research. ConclusionThe contribution of PPI to this study appears to have been beneficial to the development and evaluation of the study design, the self-worth of the reference group participants and demonstrates that the value of PPI in health research should not be underestimated.

From plans to actions in patient and public involvement: qualitative study of documented plans and the accounts of researchers and patients sampled from a cohort of clinical trials

Patient and public involvement (PPI) in research is increasingly required, although evidence to inform its implementation is limited.ObjectiveInform the evidence base by describing how plans for PPI were implemented within...

An innovative toolkit: increasing the role and value of patient and public involvement in the dissemination of research findings

Background: Evidence of patient and public involvement (PPI) in health research dissemination is weak and the development of mechanisms to assist the adoption and diffusion of PPI outcomes into research findings, patient experience and clinical practice is at an early stage. Aim: This paper seeks directly to address this weakness by increasing researchers’ awareness and understanding of the potential value of PPI in dissemination and identifying practical strategies that could improve the quality and impact of PPI by connecting the process with the wider innovation literature on adoption and diffusion. The toolkit: Guidance for these strategies is provided in the form of a toolkit that elevates the importance of PPI in dissemination of research and blends it with good practice in diffusion of innovations. It highlights how planning for PPI and dissemination at each stage of the research cycle facilitates the diffusion of research findings, while generating a culture of knowledge exchange with important stakeholders. Conclusions: Establishing and improving PPI dissemination in the research process has similarities with introducing any new innovation into a social context. Therefore, understanding and integrating insights from the literature on adoption and diffusion and linking them to PPI and the research cycle provides a different frame of reference for developing our approach in healthcare. Here we connect PPI to the adoption literature and suggest that a strong focus on the social nature of innovation will increase the reach and impact of research dissemination. This challenges the traditional research culture and suggests a need for a more open and continuous web of PPI relationships that are characterised by well balanced, timely contact and consist of appropriate and flexible interactions, planned into the whole research cycle. Implications for practice: This paper highlights the value of taking a structured approach to PPI and the importance of investing time in developing productive PPI relationships at the beginning of a project. Similarly, dissemination should be planned for and undertaken at key points and in different ways throughout the process in order to maximise its potential impact. The key implications are the value of: Widening the scope of PPI dissemination into the whole research cycle Opening up routes to improved research impact through better quality patient involvement Challenging the stereotypical relationship between researcher and patient Introducing innovation adoption concepts into PPI dissemination

Developing the SELF study: A focus group with patients and the public

Background Patient and public involvement (PPI) in the research process is a key feature of NHS Research and Development policy but reporting of the extent and value of PPI in relation to physiotherapy research is lacking. Aims To determine whether the proposed methodology within the randomized controlled trial aspect of the SELF study was acceptable to patients and to ascertain whether enhancements could be made in relation to elements that matter most to patients. Methods A focus group discussion was undertaken with four lay people who were currently attending physiotherapy. The data was transcribed verbatim and analysed using the framework method. Findings The lay members found the proposals to be generally acceptable but were able to suggest enhancements to the SELF study's design relating to recruitment, retention, blinding, and acceptability of the intervention. Additionally, we were able to recruit lay members to the trial steering committee. Conclusion The unique perspective offered by PPI has resulted in enhancements to the SELF study's design and a means of maintaining PPI throughout the conduct of the SELF study has been established.

Interprofessional collaboration with service users in the development of cancer services: The Cancer Partnership Project

Patient and Public Involvement (PPI) is a cornerstone of UK National Health Service (NHS) policy. The Cancer Partnership Project (CPP) is the leading national PPI initiative in cancer care. The CPP espouses a “partnership” model, with a “Partnership Group” – collaborative service improvement groups formed of NHS staff and service users – in each of 34 cancer networks in England. These groups aim to enable service users to influence local cancer service development and thereby improve the effectiveness of services. We interviewed 59 cancer service users and NHS staff in a reflective evaluation of CPP. Groups were active and visible in 30 networks, their main activities being: providing an accessible source of consumer opinion; prolific networking and representation; patient information and communication projects; and lobbying for service improvements. The groups exhibited some significant tensions. The motivations of professional staff varied markedly, and “obligatory” involvement as part of a person's job was counter-productive when not coupled with a “personal” belief in the value of PPI. Other controversial areas were the disclosure by patients' of personal health and treatment experiences, and emotional attachment to the group. It was concluded that partnership groups represent a useful PPI model, but more attention generally should be paid to the complexities of PPI and timescales required for meaningful cultural change.