Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective

PurposeActive patient engagement is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout the research process. However, guidance for patient engagement (PE) in HRQoL research does not exist, the evidence-base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. This is the first study to explore the values that should underpin PE in contemporary HRQoL research to help inform future good practice guidance. MethodsA modified ‘World Café’ was hosted as a collaborative activity between patient partners, clinicians and researchers: self-nominated conference delegates participated in group discussions to explore values associated with the conduct and consequences of PE. Values were captured via post-it notes and by nominated note-takers. Data were thematically analysed: emergent themes were coded and agreement checked. Association between emergent themes, values and the Public Involvement Impact Assessment Framework were explored. ResultsEighty participants, including 12 patient partners, participated in the 90-min event. Three core values were defined: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants valued the importance of building genuine, collaborative and deliberative relationships—underpinned by honesty, respect, co-learning and equity—and the impact of effective PE on research quality and relevance. Conclusions An explicit statement of values seeks to align all stakeholders on the purpose, practice and credibility of PE activities. An innovative, flexible and transparent research environment was valued as essential to developing a trustworthy evidence-base with which to underpin future guidance for good PE practice.Peer reviewe

Combining PPI with qualitative research to engage ‘harder-to-reach’ populations: service user groups as co-applicants on a platform study for a trial

Abstract Background: Patient and public involvement (PPI) in all research studies is recommended from the earliest point and in as many stages as possible. Qualitative research is also recommended in the early stages of designing. complex intervention trials. Combining both together might enable inclusion of ‘harder-to-reach’ perspectives from the target population(s), particularly when the research is intended for their benefit. However, the interface between PPI and qualitative research has received little attention. Methods: In a multi-disciplinary, mixed methods study to inform the design of incentive trials for smoking cessation in pregnancy and breastfeeding, we combined PPI and qualitative research, with some overlap. Mother and baby groups from two geographically separate disadvantaged areas, with diverse experiences of the smoking and breastfeeding, but no training or previous involvement in research, were recruited as PPI research grant co-applicants. An iterative partnership approach facilitated involvement in research conduct and design across all project phases. Group PPI members were also invited to contribute to more formal qualitative data collection, as and when indicated by the research questions, and emerging analysis. Results: We engaged with ‘harder-to-reach’ women in mother and baby group settings, rather than in academic or home environments. These settings were relaxed and informal, which facilitated rapport-building, disclosures of unexpected information and maintained trust. 21 women participated in standard PPI activities: feedback on study protocols and documents; piloting questionnaires and interview schedules. PPI members voiced some different perspectives from those captured within the qualitative dataset. 19 participated in focused qualitative research. Novel aspects were audio recorded PPI discussions, which contributed qualitative data; first, to interpret systematic review findings and construct intervention vignettes for use in the qualitative research; second, to assist with recruitment to improve sample diversity in the formal qualitative dataset; and third, to translate theory and findings presented in a researcher generated logic model into a lay tool. This had face validity for potential trial participants and used the metaphor of a ladder. Conclusions: Combining and overlapping PPI and qualitative research added ‘harder-to-reach’ contributions, sample diversity, trust and engagement in creative approaches beyond what could be achieved through PPI or qualitative research alone. (350/350

More than just ticking a box...how patient and public involvement improved the research design and funding application for a project to evaluate a cycling intervention for hip osteoarthritis

Background Involving patients and the public in research is an essential activity to ensure relevant, accessible, and appropriate research. There is increasing obligation from funding bodies on researchers to have well thought through plans for involving the public, and indeed it is often a condition for funding. Patient and public involvement activity in this project was conducted to inform a funding application to investigate the effectiveness of a cycling and education intervention in the treatment of hip osteoarthritis. Methods Six participants from a feasibility programme of the intervention attended a two-hour patient and public involvement consultation group to provide feedback on various aspects of the proposed research and intervention. During the consultation group, two independent facilitators followed a detailed plan formulated with the research team. Feedback was validated by the attendees via email following the consultation, and a report was issued to the research team. Further feedback on subsequent changes was sought via email and telephone with members of a Patient Advisory Group. Results The patient and public involvement consultation group provided invaluable feedback and suggestions which impacted on the design and quality of the research project and the intervention. Key changes to the intervention included extending the duration of the cycling programme from six to eight weeks, and inclusion of an exercise diary to promote adherence to the intervention. Key feedback regarding the design of the research and funding application included suggestions for methods of dissemination, and confirmation of the primary outcome measure. Conclusions Patient and public involvement was crucial to the design of the proposed research and intervention. It informed many aspects of the research design and made the funding application stronger as a result. Involving patients and the public in research is much more than an obligation, or ‘tick box’ exercise. It can change and improve research quality, which is crucial when answering questions that are meaningful and important to patients, and which leads to increased impact. Collaboration with patients and the public should be planned and reported from the conception of a research idea where the impact of such input can be considerable

Learning to work together - lessons from a reflective analysis of a research project on public involvement

Abstract Background Patient and public involvement (PPI) is now an expectation of research funders, in the UK, but there is relatively little published literature on what this means in practice – nor is there much evaluative research about implementation and outputs. Policy literature endorses the need to include PPI representation at all stages of planning, performing and research dissemination, and recommends resource allocation to these roles; but details of how to make such inputs effective in practice are less common. While literature on power and participation informs the debate, there are relatively few published case studies of how this can play out through the lived experience of PPI in research; early findings highlight key issues around access to knowledge, resources, and interpersonal respect. This article describes the findings of a case study of PPI within a study about PPI in research. Methods The aim of the study was to look at how the PPI representatives’ inputs had developed over time, key challenges and changes, and lessons learned. We used realist evaluation and normalisation process theory to frame and analyse the data, which was drawn from project documentation, minutes of meetings and workshops, field notes and observations made by PPI representatives and researchers; documented feedback after meetings and activities; and the structured feedback from two formal reflective meetings. Findings Key findings included the need for named contacts who support, integrate and work with PPI contributors and researchers, to ensure partnership working is encouraged and supported to be as effective as possible. A structure for partnership working enabled this to be enacted systematically across all settings. Some individual tensions were nonetheless identified around different roles, with possible implications for clarifying expectations and deepening understandings of the different types of PPI contribution and of their importance. Even in a team with research expertise in PPI, the data showed that there were different phases and challenges to ‘normalising’ the PPI input to the project. Mutual commitment and flexibility, embedded through relationships across the team, led to inclusion and collaboration. Conclusion Work on developing relationships and teambuilding are as important for enabling partnership between PPI representatives and researchers as more practical components such as funding and information sharing. Early explicit exploration of the different roles and their contributions may assist effective participation and satisfaction

Women's views of continuity of information provided during and after pregnancy: A qualitative interview study

Straightforward transfer of care from pregnancy to the postpartum period is associated with health benefits and is desired by women worldwide. Underpinning this transfer of care is the sharing of information between healthcare professionals and the provision of consistent information to women. In this qualitative study, two aspects of continuity of information were examined; first the information passed on from midwife to health visitor regarding a woman and her baby before the health visitor meets the woman postnatally and second, the consistency of information received by women from these two healthcare professionals (the main healthcare providers during and after pregnancy in England). To be eligible for the study, women had to have had a baby in England within 12 months prior to the interview. Participants also needed to be able to read and speak English and be over 18 years old. Recruitment of participants was via word of mouth and social media. Twenty-nine mothers were interviewed of whom 19 were first time mothers. The interviews took place in the summer and autumn of 2016 and were transcribed verbatim and analysed using Framework Analysis. Two overarching themes were identified: not feeling listened to and information inconsistencies. Women reported little experience of midwives and health visitors sharing information about their care, forcing women to repeat information. This made women feel not listened to and participants recommended that healthcare professionals share information; prioritising information about labour, mental health, and chronic conditions. Women had mixed experiences regarding receiving information from midwives and health visitors, with examples of both consistent and inconsistent information received. To avoid inconsistent information, joint appointments were recommended. Findings from this study clearly suggest that better communication pathways need to be developed and effectively implemented for midwives and health visitors to improve the care that they provide to women

Low intensity shockwave treatment modulates macrophage functions beneficial to healing chronic wounds

Acknowledgments: We acknowledge the University of Aberdeen Microscopy and Histology Facility and the qPCR facility for use of facilities and advice. We acknowledge Ehab Husain for scoring the patient wound biopsies. Funding: This research was funded by NHS Grampian Endowments, grant number 17/004 and by personal funding from JSH.Peer reviewedPublisher PD

A SHARED study the benefits and costs of setting up a health research study involving lay coresearchers and how we overcame the challenges

YesBackground: Involving patients and the public in all stages of research has been the focus of the SHARED study. Patient and public involvement (PPI) is an important strategic priority for the Department of Health and funders such as the National Institute for Health Research. The aim of this paper is to describe the benefits, challenges and costs involved in setting up the research study with lay members as part of the research team. The study focused on developing service user-led recommendations for people with memory loss and their carers, on discharge from acute hospital to the community. Methods: This began with a discussion of an initial research idea with a lay group of carers and people living with dementia. Once funded, approval was sought from the Research Ethics Committee and NHS Trusts to conduct the research including the active involvement of lay co-researchers. Finally, to recruit, train and pay lay co-researchers in their role. Results: The benefits of PPI have included developing ideas which are important to people living with memory loss; support for PPI received from the funders and research ethics committee, high levels of interest from volunteer groups, and lasting enthusiasm from many of the co-researchers. Organisational challenges were met in the requirement for research passports and with payment methods for the co-researchers. Training was beneficial but incurred extra costs for repeated training days. Discussion: Overall the benefits outweighed the challenges which were overcome to varying degrees. The lay co-researchers gained membership of a study group and a beneficial partnership developed with the third sector. The biggest challenge was in overcoming the differences in approach to lay co-researchers between NHS Trusts. Organisational culture has been slow to incorporate PPI and this has not yet been fully addressed. It has the potential to delay the start of projects, affect recruitment time, incur extra research costs and disadvantage PPI

Patterns of Public Participation: Opportunity Structures and Mobilization from a Cross-National Perspective

PURPOSE: The paper summarizes data from twelve countries, chosen to exhibit wide variation, on the role and place of public participation in the setting of priorities. It seeks to exhibit cross-national patterns in respect of public participation, linking those differences to institutional features of the countries concerned. DESIGN/METHODOLOGY/APPROACH: The approach is an example of case-orientated qualitative assessment of participation practices. It derives its data from the presentation of country case studies by experts on each system. The country cases are located within the historical development of democracy in each country. FINDINGS: Patterns of participation are widely variable. Participation that is effective through routinized institutional processes appears to be inversely related to contestatory participation that uses political mobilization to challenge the legitimacy of the priority setting process. No system has resolved the conceptual ambiguities that are implicit in the idea of public participation. ORIGINALITY/VALUE: The paper draws on a unique collection of country case studies in participatory practice in prioritization, supplementing existing published sources. In showing that contestatory participation plays an important role in a sub-set of these countries it makes an important contribution to the field because it broadens the debate about public participation in priority setting beyond the use of minipublics and the observation of public representatives on decision-making bodies

Reflections and Experiences of a Co-Researcher involved in a Renal Research Study

Background Patient and Public Involvement (PPI) is seen as a prerequisite for health research. However, current Patient and public involvement literature has noted a paucity of recording of patient and public involvement within research studies. There have been calls for more recordings and reflections, specifically on impact. Renal medicine has also had similar criticisms and any reflections on patient and public involvement has usually been from the viewpoint of the researcher. Roles of patient and public involvement can vary greatly from sitting on an Advisory Group to analysing data. Different PPI roles have been described within studies; one being a co-researcher. However, the role of the co-researcher is largely undefined and appears to vary from study to study. Methods The aims of this paper are to share one first time co-researcher's reflections on the impact of PPI within a mixed methods (non-clinical trial) renal research study. A retrospective, reflective approach was taken using data available to the co-researcher as part of the day-to-day research activity. Electronic correspondence and documents such as meeting notes, minutes, interview thematic analysis and comments on documents were re-examined. The co-researcher led on writing this paper. Results This paper offers a broad definition of the role of the co-researcher. The co-researcher reflects on undertaking and leading on the thematic analysis of interview transcripts, something she had not previously done before. The co-researcher identified a number of key themes; the differences in time and responsibility between being a coresearcher and an Advisory Group member; how the role evolved and involvement activities could match the co-researchers strengths (and the need for flexibility); the need for training and support and lastly, the time commitment. It was also noted that it is preferable that a co-researcher needs to be involved from the very beginning of the grant application. Conclusions The reflections, voices and views of those undertaking PPI has been largely underrepresented in the literature. The role of co-researcher was seen to be rewarding but demanding, requiring a large time commitment. It is hoped that the learning from sharing this experience will encourage others to undertake this role, and encourage researchers to reflect on the needs of those involved.Peer reviewedFinal Published versio

Experiences of in-patient mental health services: systematic review

Background In-patients in crisis report poor experiences of mental healthcare not conducive to recovery. Concerns include coercion by staff, fear of assault from other patients, lack of therapeutic opportunities and limited support. There is little high-quality evidence on what is important to patients to inform recovery-focused care.Aims To conduct a systematic review of published literature, identifying key themes for improving experiences of in-patient mental healthcare.Method A systematic search of online databases (MEDLINE, PsycINFO and CINAHL) for primary research published between January 2000 and January 2016. All study designs from all countries were eligible. A qualitative analysis was undertaken and study quality was appraised. A patient and public reference group contributed to the review.Results Studies (72) from 16 countries found four dimensions were consistently related to significantly influencing in-patients' experiences of crisis and recovery-focused care: the importance of high-quality relationships; averting negative experiences of coercion; a healthy, safe and enabling physical and social environment; and authentic experiences of patient-centred care. Critical elements for patients were trust, respect, safe wards, information and explanation about clinical decisions, therapeutic activities, and family inclusion in care.Conclusions A number of experiences hinder recovery-focused care and must be addressed with the involvement of staff to provide high-quality in-patient services. Future evaluations of service quality and development of practice guidance should embed these four dimensions.Declaration of interest K.B. is editor of British Journal of Psychiatry and leads a national programme (Synergi Collaborative Centre) on patient experiences driving change in services and inequalities