I struggle with depression so I am only too aware of the value of meaningful activity. It distracts me from the worst of my symptoms and helps me feel some sense of self-worth. I have been detained under the Mental Health Act for significant periods of time, so I am painfully familiar with how occupationally nullifying and behaviourally barren such closed environments can be. It was during my first hospital admission that I encountered occupational therapy and its human embodiment, the occupational therapist. The emphasis that occupational therapy places on the value of activity which is meaningful to the individual resonated strongly with what I have found most beneficial to my own mental health; a strong sense of purpose together with challenging and useful things to do.
Occupational therapy is innately person-centred. Within the patient occupational therapist dyad the best outcomes are realised when there is true synergy between professional and personal knowledge and expertise. This year the opportunity for this dyad to develop a new dimension; one which allows patients and their carers to inform the future direction of research into occupational therapy, has arisen
The Royal College of Occupational Therapists (RCOT) is embarking on a major project to define the research priorities for occupational therapy over the coming years. They want to know the questions and areas of uncertainty that occupational therapists, people who access occupational therapy services, their carers, and others working in the health and social care environment, have that could be answered by research.
One of the most important features of this venture is that throughout its lifetime it will be a collaborative process conducted jointly with people who access occupational therapy services, carers and practitioners. In the past the contribution of service users and carers to the development and undertaking of relevant research for occupational therapy has been captured by means of literature reviews. The James Lind Alliance has developed a more direct and transparent method for collecting and prioritising ideas from those for whom the research results are most important. This Priority Setting Partnership (PSP) marks an important change in direction for the College and occupational therapy research. I am part of the steering group for the PSP.
Considerable time has been spent discussing the communication plan which is crucial to reaching as many stakeholders as possible. We have considered feedback on engagement from the initial workshops on the use of language, the need to conduct a partners and participants stakeholder mapping exercise and to examine the Steering Group’s reach, as well as how to optimise the use of the RCOT website and social media to ensure seldom heard groups are reached and their voices and views captured.
There has been much debate as to the extent to which groups and professionals other than practitioners, service users and carers should be included/excluded from contributing to various aspects of the PSP. The JLA principles stipulate that the determination of the final top ten priorities should be the exclusive preserve of practitioners, people who access occupational therapy services and carers. However some members advocated the need to be mindful that ultimately the responsibility for answering the research questions emerging from the top ten queries priorities would rest with researchers and funders, and that it would not be politic to alienate potential allies. A consensus emerged that the PSP should adopt and deploy wherever possible the use of the language of inclusion rather than exclusion.
The delivery of the communication plan and dissemination of information about the project rests with individual members of the steering group, in addition to Project Partners; individuals and organisations with knowledge and experience of occupational therapy and an understanding of those who use the services of occupational therapists. The end goal is to ensure that the project gets as wide a range of input as possible. Given the breadth of occupational therapy practice, it is anticipated that the final top ten are likely to be high-level priorities highlighting key areas in which research activity for occupational therapy should be focused. The PSP will then work with researchers and funders to translate these high-level top ten priorities into focused research questions that reflect the context of particular areas of specialist practice.
The aim is that many of the issues raised will go on to be developed into funded research projects. For example, the Palliative and End of Life Care PSP published its top ten in January 2015; four priorities and a number of questions from the long list of questions have resulted in research projects funded by Marie Curie and the Motor Neurone Disease Association.
In addition to promoting them to funding bodies such as the NIHR, it is RCOT’s intention that the Top Ten research priorities for occupational therapy in the UK will be linked to future funding calls for the RCOT (previously the UK Occupational Therapy Research Foundation UKOTRF).
For my own part, this is the second time I’ve been involved in a PSP. Occupational Therapy is a practice close to my heart and has proved invaluable in my personal recovery. I know that I am not alone in this experience. The RCOT JLA PSP survey provides an opportunity to those who practice and those that benefit from engagement in occupational therapy to direct research which may benefit future generations. I value occupational therapy, and I think we have yet to discover all its benefits. Do you?
Sarah Markham is an academic mathematician and patient representative currently pursuing a second PhD in theoretical computer science. She is a member of the BMJ Patient Advisory Panel.
Competing interests: None declared