1 INTRODUCTION, BACKGROUND AND RATIONALE

In the United Kingdom (UK) and other developed countries, public involvement in the teaching and learning of students enrolled on higher education programmes has gained impetus. This has been driven by the requirement of higher education institutions (HEIs) to develop a future workforce that is able to engage with (and be responsive to) the environments (and those who work within them) in which they intend to seek future employment.² HEIs embrace a variety of activities which foster the qualities of leadership, responsibility, personal integrity, empathy, care and respect for others, accountability and self-regulation which are reflected in respective university graduate attributes.³

For the purpose of this paper, the terms Patient and Public Involvement (PPI) and public contributors will be used throughout to include lay members, volunteers and user and carers. The role of PPI in raising awareness of issues that are important to them, in making connections with real-life situations and the impact of processes, systems and interactions with others, is acknowledged as significant and powerful when preparing students for roles they aspire to successfully achieve in society.⁴

There has been a significant shift to involving patients and the public in the process of health-care research with organizations such as INVOLVE providing comprehensive guidance.⁵ Major research funders now require credible evidence to demonstrate how patients and the public have contributed to any research proposal and to the delivery of studies.⁶ Indeed, from a research perspective, the Public Involvement Standards Development Partnership⁷ have recently introduced six key standards “…for people and organizations that do research, support research and do public involvement to improve research”..⁷ This UK partnership incorporated national health research funding organizations (Chief Scientist Office (Scotland), Health and Care Research Wales, the Public Health Agency (Northern Ireland) and the National Institute for Health and Research (England), who collectively developed and launched the Standards. These six standards are identified in Table 1. They encapsulate much of the thinking that many HEIs have established by developing research “user” groups working with researchers, academics and clinicians; responding to the challenges of achieving and sustaining active and meaningful public involvement in research.⁸

For students enrolled on professional health-care programmes and health-related modules in the UK, there is also a requirement by professional bodies to include “service user” involvement in preparation for entry to a professional health-care register and continuing professional development, for example doctors, nurses, allied health professionals.^9-11 The term “service user” is reflected within these regulatory frameworks and for the purpose of this paper is defined as individuals and their surrounding support, for example partners, family, informal carers. This is an acknowledgement of service user expertise as “experts by experience”,^{12, 13} to facilitate students in achieving care which sustains a focus on meeting the needs of the service user within the challenging environment of contemporary health care.^{14, 15}

Public contributors are involved in the recruitment of health-care students to pre-entry programmes, consultation (entry criteria, content, process and validation of programmes), delivery and assessment of teaching and learning, the evaluation of content and other monitoring of student processes, for example Health and Conduct Committees. There has been a plethora of literature relating to how public contributors are involved in these activities and the benefits of doing so.^16-18 There has also been a considerable increase of available guidance for professionals wanting to involve service users in health-care education (eg ‘Working Together^{19, 20} The Service User and Carer Toolkit—http://www.serviceuserandcarertoolkit.co.uk/principals.html).

HEIs providing health-care education are influenced by the drivers of change within health-care provision, one of which is “co-production” described in 2012 as “the new role of citizens and civil society”.²¹ Co-production in health care is defined as “a way of working that involves people who use health and care services, carers and communities in equal partnership; and which engages groups of people at the earliest stages of service design, development and evaluation” ²² and involves a long-term relationship. Co-production was highlighted in the “Realising the Value” campaign which identified the importance of enabling people to take responsibility for their own health and to be active in working with communities and their resources,²³ whereas co-production from a research perspective “… is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge. The assumption is that those affected by research are best placed to design and deliver it and have skills and knowledge of equal importance”.⁷ The role of co-production in research is gaining interest with the publication of recent NIHR INVOLVE guidance.⁷ Co-production was seen as integral to the research presented in this paper, when designing and developing educational programmes in conjunction with public contributors, for public contributors and co-delivered by academics and public contributors in order to ensure that outcomes were indeed “fit for purpose”.

Whilst PPI is now an essential aspect of health-care education and research, there is minimal guidance available for public contributors to prepare them for the variety of roles and activities this involves.²⁴ There are few formal training courses outside of individual institutions or organizations. INVOLVE are developing a repository of training courses for research involvement available nationwide (http://www.invo.org.uk/resource-centre/learning-and-development/whats-on-this-website/), but this will not as yet include a central assessment of content or quality.

This pilot study addresses the identified gap in knowledge of PPI members within an established University in the West Midlands, affirming the need for information and support to inform their existing (and developing) roles. Personal development means different things to different people; INVOLVE advocate that staff in organizations has access to staff development to help develop their knowledge and skills yet members of the public do not always have access to organizational or informal learning opportunities and might require a more concerted approach to meet their developmental needs.²⁵

It recognized the need to appropriately prepare service users to meaningfully and effectively maximize their expertise in informing the education of health-care professionals. Embracing co-production²² and research guidance, public contributors were involved in the full research cycle⁵; from consultation, development of topic guides, data collection, data analysis, through to dissemination, implementation and evaluation of impact. According to INVOLVE,²⁶ Involvement in research refers to active involvement between people who use services, carers and researchers, rather than the use of people as participants in research (or as research “subjects”). Alternatively, Participation includes taking part in a research study, for example people being recruited to take part in a clinical trial or another kind of research study, joining in a focus group or completing a questionnaire, whereas Engagement is recognized as where information and knowledge about research is provided and disseminated, for example science festivals, open days, media coverage. PPI members were involved throughout this research form initially establishing the programme, to co-delivering the programme and dissemination on completion.

There are also different types of co-production. The NCAG has a ladder of co-production but this is used to describe co-production at a strategic commissioning level. In research, we would describe it as being involved from defining the research question right to implementing the research into practice. The overwhelming tenant about co-production is that it involves a long-term relationship.

1.3 Methods and procedures

An action research approach was adopted for this research study. Participatory Action Research projects usually have the underlying tenets of a collective commitment to investigate an issue or problem; a desire to engage in self- and collective reflection to gain clarity about the issue under investigation; a joint decision to engage in individual and/or collective action that leads to a useful solution that benefits the people involved; and the building of alliances between researchers and participants in the planning, implementation and dissemination of the research process.²⁸ PAR is fundamentally a cyclical process, alternating continuously between enquiry and action, and between practice and innovative thinking.²⁹ This alternating process actively enables the implementation of change and the subsequent generation of theory.³⁰ These aspects are all imperative to the action research process as illustrated (see Figure 1).

“Increasing importance is being placed on service users and professionals being partners in services….”³¹ and creative ways of such engagement remains important to this involvement. It has been suggested that action research as a means of cooperative investigation enables research to be undertaken in collaboration with the people involved.³² In this particular research study, the empowering and emancipation element of action research³³ necessitated a collective, self-reflective inquiry and provided the opportunity and time to consult and discuss with a number of university-based academics and public contributors across a Health Faculty from an educational strategic and operational perspective.

This particular research study incorporated several phases across the general participatory action research (PAR) framework.³⁴ Members of the PPI groups were actively involved in formulating and identifying educational topics, programme development, programme delivery, action design, implementation, evaluation and research dissemination.³⁵ Such co-productivity was perceived as fundamentally instrumental throughout this study³⁶ in keeping with PAR processes.

1.9 Phase five—Dissemination and integration of the information

On completion of the training programme, a celebratory event was held to thank everyone for their contributions and to share the findings of the evaluation. All those involved in the workshops, focus groups and training programme were invited. PPI members and academics jointly designed, organized and facilitated this event, continuing with our co-production focus. This included jointly identifying the content and format of the day's events, incorporating three presentations from the perspective of public contributors. All feedback and suggested amendments to the existing programme were considered prior to any further implementation of any future programmes.

An overview of the research process as it evolved in conjunction with the PAR process is found in Figure 2.

2 RESULTS

3 DISCUSSION

This was the first time that such an educational programme had been delivered across the Faculty at the host HEI for PPI members, so it was unique in this respect, and is likely to be unique in other similar organizations. Overall, the programme was well attended and extremely well evaluated by both participants and facilitators (see Tables 2 and 3). Educational preparation for any new programme is labour intensive, and in this case it was particularly difficult since it was a cross Faculty initiative, and those academics involved had no dispensation for the work it entailed, having to fit it in alongside their existing work commitments. Preparation for the PAR study was particularly lengthy, including: difficulties in co-ordinating meetings with academics and PPI members; helping colleagues to appreciate the inherent PAR process.

The preparation of the programme incorporating the consultation with public contributors was extensive and labour intensive (12 months). But, genuine co-productive working takes time to build relationships, manage meetings of busy people; using supportive communication, and involving the right people.⁴⁰ We talked with, and listened to, a number of public contributors across the Faculty who helped to shape and deliver the programme to meet their perceived needs.

Co-production was integral to the development, delivery and dissemination of this programme. As a delivery model for health services, co-production is based on the sharing of information and on shared decision making between the service users and providers.⁴¹ It builds on the assumption that both parties have a central role to play in the process as they each contribute different and essential knowledge.^{42, 43} PPI members were involved throughout this work, and the results well illustrate their satisfaction regarding their involvement.

The importance of PPI in research has never been stronger, yet there are few studies that measure explicit impact.⁴⁴ Due to staff and PPI members movement, follow up explorations regarding longer term impact were not conducted, which can be seen as a disappointing limitation to this study.

Should the programme continue, careful practical considerations regarding the timings (when, where and how sessions should be presented) and content of the programme requires careful thought and many discussions in keeping with the co-productive approach. The PAR approach to programme development is worthy of replicating in this particular context.

4 CONCLUSIONS

Including public contributors in all aspects of health-care programmes at a busy University in the West Midlands was an accepted important ingredient to its educational and research programmes. However, identifying creative ways to ensure continuing commitment in a meaningful way proved challenging. A pilot study was introduced across a Health Faculty to integrate PPI in a deliberate way and to provide an educational programme of events that were meaningful and appropriate. The aims of this research were to identify, develop, introduce, deliver and evaluate a programme of personal development for PPI involved educational and research activities across a Faculty of Medicine and Health Sciences, which incorporates Research Institutes and Schools of medicine, nursing and rehabilitation. Qualitative approaches to data collection and analysis worked well when meaningfully engaging with a range of people outside of the general university environment.

Co-production was a deliberately selected approach that underpinned this pilot study, resulting in a programme which was meaningfully received by service users. It illustrated well a useful framework for development programmes explicitly for public contributors, deliberately benefitting all stakeholders. Dovetailed against focus groups, both approaches worked really well.

The proposal by some participants for greater involvement of public contributors in delivering future programmes suggests a recognition of the time and effort spent by academic staff in running the programme. Indeed some participants specifically articulated their awareness of the degree of commitment from staff, both in terms of time and preparation/delivery. In addition, the co-production process seems to have provided those participants with the confidence to feel able to take on additional responsibilities in future iterations of the programme. Realpe and Wallace⁴⁵ argue that for it to “be truly transformative, co-production requires a relocation of power towards service users” and the dissemination event demonstrated that some participants felt more empowered to take forward/lead on elements of future programme delivery. Such approaches to deliberate social inclusion of PPI members are more likely to be appropriate for involving seldom heard or difficult to reach populations such as those with an intellectual disability or mental health diagnosis.⁴⁶