Twelve months into a feasibility trial: reflections on three experiences of public and patient involvement in research

In this Open Letter we present reflections from three different perspectives on the integration of public and patient involvement (PPI) in a research trial. We reflect on the experience of having a patient employed as a contract researcher, with no prior research experience, on a feasibility trial of cognitive rehabilitation in multiple sclerosis. This Open Letter is written by the PPI research team member with reflections from a researcher on the trial and the principal investigator. We will discuss some of the changes made and the impacts that have been resulted from of PPI input into the trial. We focus on PPI involvement in participant recruitment, the development of trial material, integration of PPI along the research cycle, and collaboration. We hope that this Open Letter will encourage principal investigators and groups to include PPI members as part of the research team and help patients and members of the public understand what the experience of PPI members is like.

Conceptualising and constructing ‘diversity’ through experiences of public and patient involvement in health research

Background Increasing the accessibility of public and patient involvement (PPI) in health research for people from diverse backgrounds is important for ensuring all voices are heard and represented. Critiques of PPI being dominated by ‘the usual suspects’ reflect concerns over the barriers to involvement in PPI faced by people from minority groups or non-professional backgrounds. Yet, what has received less attention is how undertaking PPI work might produce diverse experiences, potentially shaping the motivation and capacity of people from different backgrounds to continue in PPI. Methods We conducted qualitative research to explore experiences of the health research PPI field in the UK and to understand how these might shape the accessibility of PPI for people of diverse backgrounds. We conducted in-depth and follow-up interviews with five PPI contributors with experience of multiple health research projects, and a focus group with nine people in professional roles relating to PPI. Interview data were analysed using a narrative approach, and then combined with the focus group data for thematic analysis. Results The structure, organisation and relationships of health research in the UK all shape PPI experiences in ways that can intersect the different backgrounds and identities of contributors, and can pose barriers to involvement and motivation for some. Navigating processes for claiming expenses can be frustrating particularly for people from lower-income backgrounds or with additional needs, and short-term research can undermine relationships of trust between contributors and professionals. Pressure on PPI coordinators to find ‘more diverse’ contributors can also undermine ongoing relationships with contributors, and how their inputs are valued. Conclusions To increase diversity within PPI, and to ensure that people of different backgrounds are supported and motivated to continue in PPI, changes are needed in the wider health research infrastructure in the UK. More resources are required to support relationships of trust over time between contributors and professionals, and to ensure the unique circumstances of each contributor are accommodated within and across PPI roles. Finally, critical reflection on the pressure in PPI to seek ‘more diverse’ contributors is needed, to understand the impacts of this on those already involved.

The value of involving patients and public in health services research and evaluation: a qualitative study

Background Public and Patient Involvement, Engagement and Participation research encompasses working with patients/service users (people with a medical condition receiving health service treatment), public members, caregivers and communities (who use services or care for patients). The Partner Priority Programme (PPP) was developed by the National Health Service [NHS] and National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care [NIHR CLAHRC] NWC to share information and experience on evaluating new services being offered to patients that were seeking to reduce health inequalities, improve people’s health and wellbeing and reduce emergency hospital admissions. This paper seeks to explore an approach developed for involving the public as equal partners within the evaluation and decision-making processes of health and social care services research. The aim of this study was to identify how public advisors were included, the impact of their involvement, and how change occurred within the organisations following their involvement. Methods A qualitative approach using focus group discussions was adopted to explore the experiences of two cohorts of participants involved in PPP project teams. Focus groups were held with public advisors (n = 9), interns (n = 9; staff or public who received a funded internship for a PPP project), NHS and Local Authority initiative leads (n = 10), and academic facilitators (n = 14). These were transcribed verbatim and analysed using a thematic approach. Results Thirty-two public advisors were recruited to support 25 PPP projects across the Collaboration for Leadership in Applied Health Research and CLAHRC North West Coast [NWC] partner organisations. Three inter-related themes were conceptualised: 1)“Where it all started - involving public advisors” identified the varying journeys to recruitment and experiences of becoming a public advisor; 2)“Steps toward active involvement and engagement” related to public advisors becoming core team members; and 3) “Collaborative working to enhance public and patient involvement” relayed how projects identified the benefits of working jointly with the public advisors, particularly for those who had not experienced this style of working before. Conclusions The findings indicate that the PPP model is effective for embedding Public and Patient Involvement [PPI] within health services research, and recommends that PPI is integrated at the earliest opportunity within research projects and service evaluations through the use of support-led and facilitative programmes.

OP0191-PARE DEVELOPMENT OF A PUBLIC AND PATIENT INVOLVEMENT (PPI) RESEARCH NETWORK FOR PEOPLE WHO HAVE RHEUMATIC CONDITIONS

Background:Public and patient involvement (PPI) improves quality and relevance of research (1). PPI is advocated by policy makers and funding bodies and is supported by EULAR (2). Arthritis Research Limerick (ARL) is a partnership between researchers at the University of Limerick and clinicians at University Hospitals Limerick. PPI representatives have been involved in ARL projects, however no formal PPI network had been established prior to 2020. The need for a formal PPI network to collaborate with ARL was identified by both ARL and patient representatives. This need arose from a joint ambition to promote meaningful involvement of the public and patients in ARL projects and to develop a platform through which researchers and PPI representatives could collaboratively set research priorities.Objectives:The aim of this project was to create a formal PPI network to engage with people living with rheumatic and musculoskeletal diseases (RMDs) and their families and to identify collaborative research opportunities between ARL and PPI representatives.Methods:A face-to-face PPI seminar was planned for October 2020. The seminar consisted of speakers from ARL providing an overview of research projects and a World Café research ideas session. Funding was obtained through a competitive, peer-review funding call from the PPI Ignite group at the University of Limerick to support the PPI seminar. The funding application was a joint application between ARL members and a PPI partner (iCAN - Irish Children’s Arthritis Network). The seminar was advertised through national patient organisations (iCAN and Arthritis Ireland), social media and ARL research networks.Results:Due to Covid-19 public health restrictions the PPI seminar was held virtually. The ARL PPI inaugural seminar was attended by N=19 researchers and people living with RMDs. The seminar speakers included ARL researchers and a PPI representative. The World Café event was modified to adapt to the virtual seminar delivery. Research ideas were noted by the seminar organiser and summarised for attendees at the end of the research ideas and priorities session. An ARL PPI mailing list was set-up post seminar as a means of communicating with seminar attendees and will serve as a formal PPI network for ARL. Research updates and opportunities will be communicated via this formal network to people living with RMDs and researchers alike.Conclusion:This was the first PPI seminar organised by ARL in collaboration with a PPI seminar, and has led to the creation of a formal PPI network. Delivery mode of the PPI seminar was changed due to Covid-19 public health restrictions. This change may also have impacted engagement and attendance at the PPI seminar, given that virtual events are not accessible to all of the RMD population. Future PPI seminars will consider a hybrid approach of face-to-face and virtual attendance, to enhance accessibility. A formal PPI communication network has been established. Future work will focus future collaborative opportunities between the PPI panel and the ARL group, including project development, co-led research funding applications and joint research dissemination.References:[1]INVOLVE. (2012). Briefing notes for researchers: Involving the public in NHS, public health and social care research. Retrieved from www.invo.org.uk 7th January 2020.[2]de Wit MPT, Berlo SE, Aanerud GJ, et al (2011). European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Annals of the Rheumatic Diseases 70:722-726Disclosure of Interests:None declared

Public and patient involvement (PPI) in health policy decisionmaking on the health system-level: protocol for a systematic scoping review

IntroductionPublic and patient involvement (PPI) in healthcare decisions at the health system-level (macro-level) has become increasingly important during recent years. Existing evidence indicates that PPI increase patient centredness and the democracy of healthcare decisions as well as patients’ trust and acceptance of these decisions. However, different methods for PPI exist, and an overview of the outcomes and influential contextual factors has not yet been conducted. Therefore, this scoping review aims to provide an overview of the different methods used for PPI in health system decisionmaking and the reported outcomes and contextual factors for these methods.Methods and analysisThe structure of this protocol is guided by the advanced scoping studies framework of Arksey and O’ Malley, developed by Levac, Colquhoun and O’Brien, and the PRISMA-ScR Statement. We will systematically search electronic databases (MEDLINE, Cochrane Library, Scopus, CINAHL, PDQ-Evidence, Web of Science and PsycINFO) for peer-reviewed literature and screen the reference lists of included studies. Additionally, we will search for relevant grey literature and consult experts from the field to identify further information. Studies focusing on PPI in the context of health policy decision-making at the macro-level will be eligible for full-text screening. Studies focusing on decisions at the individual treatment-level (micro-level) and the organisational-level (mesolevel) as well as those dealing with PPI in health research will be excluded. A qualitative analysis will dissect how the included studies define PPI and its desirable outcomes, the achieved outcomes and reported contextual factors.Ethics and disseminationWe will present the results at relevant conferences and in an open-access journal. Additionally, we will share them with the experts involved in the research process and consider ways in which to transfer the findings into practice. As only secondary and previously published information will be used, ethical approval is not necessary.

Public and patient involvement in health data governance (DATAGov): protocol of a people-centred, mixed-methods study on data use and sharing for rare diseases care and research

IntroductionInternational policy imperatives for the public and patient involvement in the governance of health data coexist with conflicting cross-border policies on data sharing. This can challenge the planning and implementation of participatory data governance in healthcare services locally. Engaging with local stakeholders and understanding how their needs, values and preferences for governing health data can be articulated with policies made at the supranational level is crucial. This paper describes a protocol for a project that aims to coproduce a people-centred model for involving patients and the public in decision-making processes about the use and sharing of health data for rare diseases care and research.Methods and analysisThis multidisciplinary project draws on an explanatory sequential mixed-methods study. A hospital-based survey with patients, informal carers, health professionals and technical staff recruited at two reference centres for rare diseases in Portugal will be conducted first. The qualitative study will follow consisting of semi-structured interviews and scenario-based workshops with a subsample of the participant groups recruited at baseline. Quantitative data will be analysed using descriptive and inferential statistics. Inductive and deductive approaches will be combined to analyse the qualitative interviews. Data from scenario-based workshops will be iteratively compared using the constant comparison method to identify cross-cutting themes and categories.Ethics and disseminationThe Ethics Committee for Health from the University Hospital Centre São João/Faculty of Medicine of University of Porto approved the study protocol (Ref. 99/19). Research findings will be disseminated at academic conferences and science promotion events, and through public meetings involving patient representatives, practitioners, policy-makers and students, a project website and peer-reviewed journal publications.

(Re)defining legitimacy in Canadian drug assessment policy? Comparing ideas over time

How do experts judge the legitimacy of technical policy processes, and do their ideas change as these processes are opened to other stakeholders and the public? This research examines the adoption of public and patient involvement in pharmaceutical assessment in Canada. It finds tensions between scientific legitimacy that prioritizes rigor and objectivity, and democratic legitimacy that values inclusion and a broader range of evidence. In response to policy change, experts incorporate new ideas about democratic inputs and processes, while maintaining scientific policy goals. The research responds to calls for more precise measurement of ideas and ideational change and more evaluation of public and patient involvement in health policy. It helps us understand the significance of, and limits to, ideational change among experts in health policy domains that are highly technical and publicly salient. Understanding the way democratic and scientific legitimacy are negotiated in policy decisions has a wide applicability in health, but is particularly relevant during a global pandemic when evidence is being generated rapidly, decisions must be made quickly, and these decisions have a significant, immediate effect on the lives of all citizens.

Twelve months into a feasibility trial: reflections on three experiences of public and patient involvement in research

In this Open Letter we present reflections from three different perspectives on the integration of public and patient involvement (PPI) in a research trial. We reflect on the experience of having a patient employed as a contract researcher, with no prior research experience, on a feasibility trial of cognitive rehabilitation in multiple sclerosis. This Open Letter is written by the PPI research team member with reflections from a researcher on the trial and the principle investigator. We will discuss some of the changes made and the impacts that have been resulted from of PPI input into the trial. We focus on PPI involvement in participant recruitment, the development of trial material, integration of PPI along the research cycle, and collaboration. We hope that this Open Letter will encourage principle investigators and groups to include PPI members as part of the research team and help patients and members of the public understand what the experience of PPI members is like.

A protocol for the evaluation of the process and impact of embedding formal and experiential Public and Patient Involvement training in a structured PhD programme

Background: Incorporating Public and Patient Involvement (PPI) into doctoral research is valued by PhD scholars. The importance of providing early career researchers with appropriate education and training to develop skills to conduct meaningful involvement has been articulated. The Collaborative Doctoral Award in MultiMorbidity (CDA-MM) PhD programme embedded formal PPI training as a postgraduate education component. Four PhD scholars taking part in the CDA-MM established a PPI panel comprising people, and carers of people, living with multimorbidity (≥2 chronic conditions), presenting an opportuning for experiential PPI training. The proposed study aims to evaluate the process and impact of formal and experiential PPI training during a PhD programme. Design: Embedding PPI training in a PhD programme is a novel approach. This evaluation will include a process evaluation to provide an understanding of the workings of the PPI panel and explore the experiences of key stakeholders involved, and an impact evaluation to assess the impact of embedding PPI training in a PhD programme. This study is a longitudinal mixed-methods evaluation, conducted over 24 months. Participants include PhD scholars, PPI contributors and PhD supervisors. An independent researcher not aligned with the CDA-MM will lead the evaluation. Data collection methods include focus groups, individual interviews, an impact log and group reflections. Qualitative data will be analysed using thematic and content analysis and quantitative data will be analysed using descriptive statistics. Discussion: This evaluation will report the learnings from embedding formal and experiential PPI training and education across a PhD programme.