Co-production in research: co-researcher perspectives on its value and challenges

Service user and public involvement in research (often referred to as patient and public involvement or PPI) is an important issue for health and social care practitioners, for whom co-production of research is perceived to be in line with professional person-centred values (Harries et al., 2019). In order to embrace this principle, we suggest that it is essential to understand how service users have historically been marginalised in research, a position that both reflects and perpetuates organisational policy and professional assumptions, attitudes and approaches.

Within health and social care, research has traditionally been led and undertaken by professionals and practitioners. In general, the voices of service users, family members and people in marginalised communities have been sidelined as a result of these traditional hierarchies. For these voices to be heard changes are needed in the way in which service users, communities and the public are engaged and included in research. Such engagement is most meaningful when it occurs at all stages of the research process (INVOLVE, 2012). This enables people with a vested interest in the research to move beyond merely being research participants or acting as consultants on the research into sharing ownership of research and the research process. This is not exclusive ownership but joint ownership, embracing multiple perspectives and benefitting everyone concerned.

It is important to acknowledge that historically excluding the voices of disabled people and their carers in research has not just ignored their needs and priorities, but such marginalisation has often led to the introduction of policies and provision of services which further exacerbate their position. This may have been unintentional on the part of researchers, but we must acknowledge that much traditional research has focussed on asking what is wrong or different about disabled people and how they can be cured or fixed, thus framing people as the problem and professionals as providers of solutions. Increasingly, disabled people and the service user movement have challenged this traditional medical or individualised model. However, it seems that ideas which reflect the social model of disability do not always translate into the aims and methods of research.

For the engagement of service users in occupational therapy research to be successful, we suggest two prerequisites. Firstly, the focus of the research and its intended outcomes must be important and relevant to service users; this clearly requires collaboration with service users themselves, as those most directly affected by any research-driven changes in practice. Secondly, an inclusive process built on the foundation of co-production of knowledge between all stakeholders is vital. This requires a commitment to the values of shared power, respect, trust, flexibility of thinking and willingness to learn from one another. Through bringing together these multiple and diverse perspectives, personal and professionally held assumptions can be challenged, new understandings and knowledge generated, and shared ownership of the research agenda and process created.

That being the case, it is perhaps surprising that occupational therapy with its client-centred values can provide minimal evidence of user involvement in research (Hammell et al., 2012), although recently there have been some valuable examples of inclusion (Bryant et al., 2016; Honey et al., 2019). Indeed, it would appear that, to date, the majority of the research published in occupational therapy journals is in an authoritative professional voice dictating the focus of the research and identifying what service users need. Peer-reviewed journals have a role in setting the tone for future research and therefore should reflect on their part in perpetuating the status quo.

So often, what is missing are the perspectives of those using the services or interventions and evidence of their engagement in and influence on the research process. When voices are heard it is primarily in the role of research participant rather than that of co-researcher. This mirrors the established hierarchical power dynamics in service delivery (Oliver, 2004), those of occupational therapist as provider and service user as passive recipient of treatment and services. If the values base and professional standards of occupational therapy are of co-production and partnership with service users and family members it is vital to encourage this approach within the profession’s research activity and academic publications.

Co-production is much more than a technique or box to be ticked; while there may be many practical guides to the process of co-production, of central importance are relationships, trust and equality, values which underpin co-production in research. We have found that co-production of research takes time; time not only to develop research skills of service users and professional researchers alike, but also time and energy to discover how best to work together. It is these relationships which are vital in supporting and sustaining co-production within research and, as diverse individuals and groups will be involved, we would be ill-advised to advocate one single approach. Good co-production is an organic process that evolves and is shaped and negotiated by all concerned as the research progresses. Ultimately, the value of developing relationships between service users and professional researchers enables the movement towards a level playing field where service user researchers and professional researchers are equally valid and valued. Truly co-produced research provides the potential for greater change in service delivery, collective outcomes and individual experiences. It requires a wider commitment not only to change the culture of research but also to challenge some long-standing assumptions and practices, and this will not be achieved overnight.

Encouragingly, the Royal College of Occupational Therapists has stated its intention to work proactively with service users and the public in research. This is evidenced in their research and development strategy (Royal College of Occupational Therapists, 2019) and through their work with the James Lind Alliance, which has established research priorities that are important to the people and communities who engage with occupational therapy. These initiatives mark a commitment to a change of culture in which service users and the public are viewed as collaborators in and co-creators of research. Evaluating these initiatives will be essential in capturing the impact of any culture change on occupational therapy research practices and research outputs such as publications.

When bidding for money for research, funding bodies such as the National Institute for Health Research require researchers to evidence how they have involved service users and the public in the development of research proposals. While this is a positive stance and marks an appreciation of the value of the service user perspective, a note of caution and challenge to funding bodies is offered. There is a risk of tokenism through a reliance on mere one-off consultations with service users, as researchers may aim merely to tick the ‘service users involved’ box prior to submission. There is a need for greater recognition by funders and researchers of the range of involvement practice and value that collaborative and service user-led research (INVOLVE, 2012) can bring to the production of knowledge and the quality of research. Without this recognition, such tokenism risks being perpetuated.

Pragmatic barriers to realising inclusion and diversity in research are inflexible institutional payment systems, frequently unable to respond effectively to reimburse service user expenses and offer appropriate financial recognition to service users for their skills and experience. Access to library facilities, which provides service users with essential tools to undertake research, can be difficult to arrange, leading to frustration for all parties interested in the success of co-produced research. Unfortunately, our experience suggests that co-production in research currently relies excessively on goodwill rather than proactive enforcement of government, university and National Health Service (NHS) policies and procedures. Getting the right level of funding for research, which recognises and appropriately remunerates service user expertise, is vital for future partnership development between service users and professional researchers.

When aiming for true co-production, inclusion and diversity need to be built into the design from the outset. Key is ensuring that research is founded on an approach and methodology that is committed to dialogue, which allows space for challenge, disagreement and compromise. We acknowledge that not all research needs to be co-produced. Based on our experience of working together on a National Institute for Health Research mental health project (Rwire, 2015), we firmly believe that the rewards of including service users as co-researchers throughout all stages of the research outweigh the challenges of co-production. In this way, we feel that the value of bringing together multiple perspectives in the construction of new knowledge and understanding in occupational therapy and other health and social care professions will be realised.