What are the mechanisms that enable the reciprocal involvement of seldom heard groups in health and social care research? A rapid realist review protocol

The rise of public and patient involvement

Both nationally and internationally, there continues to be a significant emphasis in the literature on advancing our understanding of what public and patient involvement (PPI) in health research involves and on mapping subsequent impacts^1–5. This work builds on advances in the humanities and social sciences literature around community based applied research, focused on co-design, community capacity building, emancipatory and participatory action research^6–10. As PPI, knowledge exchange and co-design become more generally entrenched in legislation, standards and linked with mandatory funding requirements¹¹, focus has shifted onto what is required to sustain and embed these principles within university structures¹. Whilst the policy and funding shifts are to be welcomed, there is also the awareness that the change has been slow, often manifesting at the lowest levels of engagements¹². Ocloo and Matthews outline a range of reasons why achieving genuine patient involvement presents challenges, citing in particular a lack of diversity of those becoming involved¹³. The sustainability of PPI has become a more recent priority in the literature in tandem with an interest in advancing co-production/co-design^14–17. These shifts brings new demands to support, develop and sustain long-term reciprocal partnerships. Key to this are efforts, initiatives, and strategies designed to enhance the collaborative capacity skills of researchers, the public and those working within the health system¹⁸. Also critical are refining the financial and ethical structures of universities and health organisations, providing on-going education and training and celebrating success by providing recognition built into career metrics¹⁹.

Recently attention has focused on developing structures responding to the challenges identified in growing and sustaining PPI^20–24. In Ireland this shift has started to commence. The work of the Campus Engage National Network, for example, has enabled a process of embedding civic engagement as a core function across the seven Irish universities and Dublin Institute of Technology (DIT). Their recent report points to a number of priorities centred on managing expectations, building infrastructure, implementing policies, leadership for innovation and streamlining funding. The Health Research Board’s (HRB) current strategy recognises and commits to embedding and strengthening PPI via their supported programs and projects. Following survey consultation with researchers and members of the public, by the HRB, a clear gap identified was in the need to support and guide researchers on how to approach PPI. It is within that context that the HRB launched the PPI Ignite Awards focused on institution wide responses. Currently, five universities have received funding under this scheme (UCD, DCU, TCD, UL, NUIG).

PPI Ignite and the University College Dublin context

The UCD PPI ignite connect team was successful in receiving funding to embed PPI in a variety of different ways across University College Dublin (UCD). Our working PPI definition stems from the UK National Institute for Health Research advisory group INVOLVE as “research being carried out “with” or “by” members of the public rather than “to,” “about” or “for” them”. University wide preliminary consultation commenced in 2016 to produce a “status report” of UCD’s existing PPI activity and supports. Approximately 20 submissions were collated by the UCD Research Office, followed by a facilitated interactive round table forum which, for the first time, brought together a wide range of internal PPI stakeholders. It was evident that there exists a diversity of PPI activity exists across the university and within affiliated Ireland East Hospital group (IEHG) partners. While some researchers were interested in incorporating PPI into their work but needed support to do it, there was also a significant body of expertise among those for whom PPI forms a core part of their research process. For example, within the health systems research team and researchers in social work group, PPI and co-design is integral to the research process with diverse stakeholder involvement throughout projects^25–27. In the UCD Conway Institute, patient groups are being involved in research within the areas of oncology and blindness. These conversations formed the consensus that there is a diversity of PPI activities occurring across UCD, involving a breadth of PPI groups. However, these PPI activities are not joined up and following consultation several barriers were identified that need to be addressed to embed PPI as a core UCD activity, ensuring it aligns with the overall UCD strategy. The UCD PPI Ignite Connect program includes focusing on capacity and capability, embedding PPI within research and teaching, supporting knowledge mobilisation and network formations and developing PPI governance structures.

A significant focus of the UCD PPI Ignite Connect program is to overcome the often-identified challenges as noted by UCD researchers and within the literature of engaging ‘seldom heard groups’²⁸. ‘Seldom heard’ a term defined by NHS involvement:

Other population groups may also face marginalisation and exclusion from engagement, including people with disabilities, frail older people and people in institutional settings (e.g. care homes, prisons). Being ‘seldom heard’ indicates that existing structures, organisations and services that target their needs are not adequately enabling their voice to be heard via their current participation processes. The literature also uses an array of other terms in particular ‘hard-to-reach’, however, the utility of such a term has been questioned^29,30. It is within this context that we will undertake a rapid realist review to answer the question; what are the mechanisms that enable the reciprocal involvement of seldom heard groups in health and social care research?

Why a rapid realist review of mechanisms?

Rapid realist reviews (RRR) are iteratively built on theoretical and empirical literature, enabling an unpacking of contexts and interrelated mechanisms underlying implementation activities^31–33. Significantly, they include the synthesis of a diversity of evidence types and actively involve diverse stakeholders in the co-production of the literature review process, ensuring increased clarity and awareness of the transferability of the review findings³⁴. In particular, RRRs are useful during the commencement phase of a multiphase project where findings need to be rapidly adapted to take account of emerging evidence and where there is limited time and resources³⁵. This is the case for the UCD PPI Ignite Connect program as the results of this RRR will be rapidly translated into action plan as part of the overall program.

The basic question of an RRR is ‘what is it about this intervention that works in this context and why’?³⁴. A RRR works on understanding what are the contexts (C), mechanisms (M), and outcomes (O) that enable or constrain the implementation of an intervention (Figure 1).

Figure 1. Rapid realist review of the evidence - What works, for who and in what circumstances?

This figure has been reproduced from 35 under a CC-BY 4.0 license.

The recent literature has recognised that interventions are implemented through a process of evolving mechanisms, which speak to the reasoning and behaviour of the relevant personnel or collectives³⁶. However, these mechanisms are often not recognised in the reporting literature except in reference to general barriers and facilitators to implementation^37,38. Pawson and Tilley have conceptualised mechanism as a combination of resources offered by the programme of study and the stakeholders reasoning in response³⁹. Building on this earlier work, Lacourture et al. (p.8) have extended this definition of mechanisms to include ‘an element of reasoning and reactions of (an) individual or collective agent(s) in regard to the resources available in a given context to bring about changes through the implementation of an intervention’⁴⁰. Resources are also relevant and will be included in this RRR as they interplay with the reasoning of health and social care researchers and seldom heard groups as to what is possible as well as desirable in practice³⁵. While the focus of this RRR will be on mechanisms, the realist elements of context and resources will be pertinent in as far as they interplay with the operationalising of mechanisms. Context in this study refers to the embedding of PPI within research structures and the subsequent establishment of the UCD PPI Ignite program.

Aim of the review?

Our overarching RRR aim is to determine the mechanisms that enable the reciprocal involvement of seldom heard groups in health and social care research. This RRR will adhere to the RAMESES realist publication standards guide⁴¹ with adaptations to streamline and accelerate the process as advised in the literature^34,35.

Design

Key to the success of an RRR is the engagement of expert and reference panels³⁵. Reference panels are essentially sounding boards providing local contextual knowledge to ensure that the review and final conceptual model is inclusive to the experience of those ‘on the ground’³³. Previous work has involved site visits, workshops and a curated twitter chat to enable reference panel process³⁵. The expert panel includes content experts who must ensure that the review and the programme theory reflects current thinking. They are pivotal to the success of the overall RRR process. Expert panel members are also requested to contribute relevant documents to be included in the RRR review. Significantly, they are requested to include grey or operational documents to the process, thus improving access to material not yet published³⁵. Secondly, the panel validates via consensus the final conceptual model. Expert panel involvement does not replace a literature search, rather it provides a way of quickly identifying relevant material for inclusion in the review and for tailoring a search strategy. Panellists draw on their expertise to ensure any interpretations of the literature fit with the experiences of those involved in the content area, as well as with the needs and realities of the local context. The expert panel will convene in March 2018 consisting of national and international members who have experience in health and social care systems, PPI, co-design, emancipatory research and UCD PPI Ignite Connect PPI organisations representing seldom heard groups. Membership of this group is currently being finalised.

Clarify the scope

The first inception meeting with expert panels members will clarify the scope of the RRR. Prior to the meeting ENS will undertake an initial scoping of the literature. The first meeting will clarify the research question, agree inclusion/exclusion criteria, search strategies and databases being used. Discussions at this initial meeting amongst the expert panel will also focus on how to ensure that local knowledge will be captured via the reference panel process. Previous work has involved site visits, workshops and a curated twitter chat to enable the reference panel process³⁵. Initial discussions in the development of this protocol suggested a number of roadshow workshops with some of our PPI partners as a reference panel process. This is an innovative approach that will enable the capturing of experiences from those seldom heard groups to be included in the programme theory. The reference panel process will be agreed upon by the expert panel at the initial expert panel inception meeting.

Search for evidence

The search for evidence in an RRR is iterative and will be progressively extended and refocused based on the identified sources as the review evolves. Data will be extracted over 14–16 weeks and weekly data sessions will be held to critically appraise, analyse and synthesise the data. Two members of the team, ENS and TK in consultation with a university faculty librarian, will undertake a search of the literature using PubMed, Cinahl and Web of Science databases. These databases are suggested as they offer extensive and complementary indexing of relevant literature. Added to this we will search grey literature data bases such as OpenGray and the INVOLVE evidence library. This search will also be supplemented with key articles and other documents as identified by the expert panel group.

Evidence synthesis and program theory consensus

A modified version of the template for Intervention Description and Replication (TIDieR) checklist will be used for data extraction⁴¹. The method of moving from data extractions to developed programme theories is iterative and takes place in parallel with ongoing consideration of the literature^32–34. This will be carried out by ENS and TK and emergent C(context)-M(mechanisms)R(Resources) and O (Outcomes) will also be discussed with others in the expert panel to obtain multiple perspectives. A final consensus meeting will be convened with the expert panel, once synthesis of the literature is complete, to validate and prioritise the conceptual model.

Dissemination of findings

Findings will be translated into evidence-based, practical knowledge, action plans and recommendations that will be shared with and applied by the UCD PPI connect team in their work. They will be disseminated in the form of a final short synthesis report, presentations to UCD PPI Connect stakeholders and via a peer reviewed publication.