We now have a significant amount of literature on values, frameworks and guidance on how to evaluate, report, and share lessons learned from undertaking and enabling public and patient involvement (PPI) [1, 2]. One such example is the framework in which INVOLVE, who were funded by the National Institute for Health Research to support public involvement in research. They developed six fundamental values for PPI in research [3]. They are respect, support, transparency, responsiveness, and fairness of opportunity and accountability [3]. They have been tested within PPI collaborations [4]. Others approaches have involved the use of reporting tools such as the GRIPP2 checklist to enhance transparency of the types of PPI undertaken in health and social care research [5,6,7,8]. Yet another example is the public involvement impact assessment framework, which guides researchers on how to capture various types of impact from PPI [9, 10]. A recent systematic review identified a total of 65 frameworks for PPI support and evaluation [11]. These were categorised under five themes of power-focused; priority-setting; study-focused; report-focused; and partnership-focused [11]. The review notes that frameworks were context-specific and often did not transfer to other settings. The study concludes that attention should now shift to enable context-specific co-design activities that involve PPI partners. Crucially, these activities should be independently facilitated to enable equitable involvement [11]. Evidence of context-specific initiatives that are focused on learning and collaborating are now emerging within the literature as best practice [12,13,14].
In 2017, two national research funders in Ireland, the Health Research Board (HRB) and the Irish Research Council (IRC), launched a joint call entitled ‘PPI Ignite’ to support higher education institutions to embed PPI deeply into their organisational culture. Five universities were initially successful in receiving funding (University College Dublin, National University of Ireland Galway, Dublin City University, Trinity College Dublin and the University of Limerick). Since these academic institutions and their PPI partners have been working together to support PPI knowledge sharing nationally and to create a national network of expertise. Each of the PPI Ignite teams has been working to leave a visible ‘footprint’ within their institutions and have been collaborating and networking externally with PPI partners and collaborators. For example, the UCD PPI ignite program has focused on actively embedding PPI in health and social care related research, education and training, professional practice and administration across UCD structures [15]. We recognise that PPI can occur across a spectrum of activities such as advising on consent sheets, inputting on interview questions, and co-designing all elements of a study from idea development to implementation of findings [15]. A significant focus of our work in UCD PPI Ignite has been on overcoming barriers to the involvement of seldom heard voices, which we have defined in previous work [15, 16].
As part of the UCD PPI ignite program, we undertook a rapid realist review to clarify what was needed to involve seldom heard voices in health and a social care research [16]. We found that PPI partners in community and patient organisations were often approached by academics very close to the grant application deadline and were expected to sign off on the research plan without prior involvement. Frequently researchers came to PPI partners for their signature not offering any process to design the research together from the start. PPI partners were often spending significant time to ensure that the project was culturally appropriate for their population group and accessible [16]. Conversely, the work of researchers often extended beyond the scope of the funded project to provide support to their PPI partners. In many instances, it was junior contract staff who undertook this work. They were spending significant amounts of time with PPI partners to build reciprocal relationships and trust. This ‘invisible’ work was typically not acknowledged by universities in terms of career progression [16]. The rapid realist review concluded that radical changes would be required related to communication, development of protocols guiding continuous involvement among partners, funding and clarity on data ownership [16]. Funders are now encouraging that research grant applicants must include PPI partners as co-applicants [16,17,18,19]. This requires the early involvement of PPI partners in the joint development of the research study or program [20]. The literature notes that during this process, PPI co-applicants and researchers may pursue different agendas than can lead to misunderstandings and conflict [21, 22]. In the United Kingdom work has led to the development of an ethical framework for researchers at the early research design stage [22]. In Australia, guidelines from the National Health and Medical Research Council states any research involving Australian Aboriginal people’s needs to demonstrate a return for this marginalised group who ‘have the right to define benefits according to their values and priorities’ [23]. A recent reflective piece in the literature has argued that non-Aboriginal and Torres Strait Islander Peoples and communities researchers must be committed to spending the time to learn about a community’s past and future to enable the development of care and trust within a research partnership [24]. This work reinforces the need to ensure involvement before research commences.
A recent UCD PPI Ignite knowledge sharing event amongst university and external PPI partners in October 2019 involved a presentation by Alzheimer’s Society (LO’P) on the work of their Dementia Research Advisory (DRA) team. This team includes a group of people living with dementia and carers who are involved in dementia-research as co-researchers. During the session, some challenges were noted in particular during the pre-commencement stage of research projects. This stage includes the time before a research projects/partnership starts or when funding is being applied for. The DRA team had made significant efforts to promote their availability to potential researchers but had received minimal uptake for their input or involvement. More broadly, it was noted that researchers were often approaching PPI partners towards the end of the application process often requesting sign off from PPI co-applicants on a developed application. As a result, the DRA team felt they had very little power or influence to shape funding applications at this pre-commencement stage. The discussion within the group questioned how feasible it was to be inclusive at this pre-commencement stage due to time pressure or how seldom heard voices could be involved when there is often short time frames for submission. Academics attending outlined how they felt curtailed due to a lack of guidance on what type of involvement was appropriate for this stage. Not surprisingly, a lack of resources was highlighted by all at this pre-commencement stage, meaning that the process was ad-hoc and rushed. As a response to these challenges, we agreed there was a need to spend time developing a values-based approach to be used at the pre-commencement of PPI projects. This paper presents a description of the collaborative co-design approach that led to the development of values.
What are values
Values are those deeply held ideals that people consider to be important. They are vital in shaping our attitudes and motivating our choices and behaviours [25]. Making values explicit within PPI is stressed in the literature [26,27,28]. We wanted to ensure that our values in UCD PPI Ignite were grounded in an understanding of equality and human rights and continued our focus on seldom heard groups. From our initial scoping of the literature and discussions with a diverse cohort of PPI partners, it was agreed that we should focus on the pre-commencement stage. The rationale for the workshop came from the observation that a values-led approach would be fundamental for more inclusive, collective and effective PPI across all stages of involvement (see Fig. 1).
To clarify our thinking and to ensure all perspectives were heard, we aimed to advance our work by inviting a diverse group of participants to a workshop in February 2020 who are involed in PPI in Ireland to agree our vaules. This paper outlines our approach, the agreed values that were reached via consensus and key points from the discussion on them.
