Top 10 priorities for occupational therapy research in the UK

Made up of people who have accessed occupational therapy, their carers and occupational therapists, this group agrees the scope of the project, the plan of action and takes responsibility for the PSP.

• Membership of the steering group is listed at the bottom of this page.

We created a survey and asked people who access occupational therapy services, their carers, occupational therapists and others with an interest in occupational therapy to respond by posing questions they would like research to answer.

With oversight from the steering group, our Information Specialist sorted all the responses and created summary questions, which form the longlist of questions.

The longlist of summary questions was checked against existing research evidence to ensure they haven’t already been answered. Questions that have already been answered by research were removed.

We asked people who access occupational therapy services, their carers, occupational therapists and others with an interest in occupational therapy to prioritise the questions in an interim priority setting survey. We are analysing the responses to create a shortlist of summary questions which will be discussed at a workshop on 27 July 2020.

The prioritised summary questions from the interim priority setting survey will be discussed in an online one-day workshop on Monday 27 July 2020. People who access occupational therapy services, carers and occupational therapists will together agree the top 10 list of priorities. The workshop will be facilitated by advisers from the James Lind Alliance.

The top 10 will be announced and published on the RCOT and JLA websites, promoted to researchers and research funders. The PSP will work with researchers and research funders to further develop the priorities into specific research questions.

Identification of the Top 10 research priorities for occupational therapy in the UK is just the start of ongoing work.

What RCOT are doing to take the Top 10 research priorities forward?

• Distributing the full report widely, including to key research funders in health and social care, publication in a peer-reviewed journal, ongoing promotion via social media, the RCOT website and its newsletters and bulletins, conference and other presentations and workshops.
• Linking the Top 10 priorities to funding available to members through the RCOT Research Foundation.
• Expanding the range of resources and opportunities offered to develop members’ research-related confidence and skills.
• Lobbying for greater access to and uptake of practice-based research-related career pathways.
• Working with members of RCOT’s Specialist Sections to support them to identify research questions relevant to their own particular areas of specialist practice that help to address the Top 10.
• Supporting our Specialist Sections to engage meaningfully with people with lived experience, including those from under-represented and marginalised groups within society, to ensure they are involved the process of developing specific practice based research questions.
• Sharing questions submitted in the initial consultation survey related to influencing government policy and service provision but out of scope of the OTPSP with the RCOT Professional Practice team to help inform their policy and public affairs work and other campaign and promotional work.
• Sharing other out of scope questions submitted in the initial consultation survey and related to education of the public or occupational therapists themselves, career promotion, diversification of the workforce and raising the profile of the profession, with RCOT departments leading ongoing strands of work in those areas.
• Using the priorities to try to influence funding calls issued by external research funders in the health and social care environment.
• Monitoring the impact of the Top 10 through, for example, identifying funded research linked to the Top 10, its findings and impact on practice.

The top 10 research priorities are broad summary questions. They were identified from a total of 66 summary questions derived from the 2000+ questions that were submitted to the PSP’s initial survey. Each of the top 10 questions provides an opportunity for several focused research questions to be generated across a range of service delivery contexts and areas of practice, across the lifespan and in relation to a whole range of different groups and communities.

• All occupational therapists regardless of their role or context of employment have a contribution to make to address the Top 10 priorities. Contributing to the development of the evidence base can support individual therapists to thrive and develop their careers, and a growing, robust evidence base will raise the profile of the profession.
• Departmental leads and service managers are encouraged to recognise and emphasise the inseparable relationship between engaging in and with research and the delivery of high-quality cost-effective practice. Building mutually advantageous partnerships with universities is a valuable approach that will not only help to answer those questions, but will also provide an opportunity to help build research capability and capacity within your team.
• Occupational therapists who are working towards developing their research-related skills and confidence are encouraged to contribute to identifying practice-related research questions that address the Top 10. It might be possible to work in partnership with those with more research experience and expertise to address those questions, and to help shape and inform study designs in partnership with those who access services. Seeking opportunities in a way that supports individual development and simultaneously supports a study to progress, for example through contributing to a literature review, helping to recruit participants or collecting data will contribute to addressing the top 10.
• Pre- and post-registration learners are encouraged to consider how the Top 10 might help to shape their individual research projects. Students and apprentices themselves can consider how their research project might make a small contribution. Maybe, over time, that idea might grow into a whole programme of research directed by one of the profession’s research leaders of the future.
• Occupational therapy academics are encouraged to incorporate reference to the Top 10 within pre- and post-registration education to help inspire and build the research-related knowledge, skills and confidence of the next generation of practitioners and researchers.
• Established researchers, whether employed in practice or academia, are encouraged to develop future programmes of research that actively address specific elements of the Top 10. Using the Top 10 priorities can support bids to highlight the value and importance of the research to funders. Building in opportunities for the research-related up-skilling of other occupational therapists will benefit the profession and professional practice.

We all have a role in contributing towards addressing the Top 10 priorities. The RCOT Research and Development Strategy (2019) highlights that doing so helps ensure that the individuals, groups and communities we work with receive the best possible input from the profession and that services are developed and delivered in the most cost-effective way. Your contribution to taking the Top 10 priorities forward can make a difference.

The James Lind Alliance is a non-profit making initiative established in 2004. Its infrastructure is funded by the National Institute for Health Research (NIHR). It brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the top 10 unanswered questions or evidence uncertainties that they agree are the most important.

RCOT decided to work with the James Lind Alliance to make use of its high-profile, credible and well-established methodology which ensures that people with lived experience and people with professional expertise work in partnership to identify and agree the priorities that emerge from the process. RCOT’s Occupational Therapy Priority Setting Partnership project was launched in March 2019.

An open call for expressions of interest to join the Steering Group was shared in OTnews, on the RCOT website, through RCOT newsletters and social media and via direct communications with a range of networks. RCOT used its existing connections with external organisations focused on Patient and Public Involvement (PPI) to publicise the open call for expressions of interest to people with experience of accessing occupational therapy and their carers/families.

32 expressions of interest were received from people with professional expertise and seven were received from people with experience of accessing occupational therapy and their carers/families. 13 people with professional expertise were invited to join the Steering Group, based on their area of expertise, the sector they work in, level of experience and their geographical location. Five people with experience of accessing occupational therapy services and their families/carers were invited to join the Steering Group based on a similar set of criteria.

The membership of the Steering Group is available further down this webpage.

Throughout the project we aimed to engage as wide an audience as possible, which also included reflecting the population across the UK as recorded in the 2011 UK Census.

Throughout the project, RCOT used the INVOLVE Guidelines to inform the way we work with people who access occupational therapy services and their carers/families. We enabled people’s participation by recompensing them for their time in preparing for and attending meetings, compensated them for their travel and any associated costs for personal assistants. Outside the core project team, 25% of the PSP Steering Group were people representing those who access services and their carers. Amongst them were the Deputy Chair of the National Co-Production Advisory Group and the Chair of the Think Local Act Personal Board.

We recognised that an online survey would not be accessible to everyone, so alternative ways of sharing and responding to the surveys were provided, including:

1. An easy-read version of the first survey which was available to download from our website or offered as a hard copy on request.
2. Downloadable resources on our website such as posters and flyers and hard copies of the survey (in Word and PDF). The project team was also able to send hard copies of survey materials along with a stamped addressed envelope.
3. Welsh versions of both surveys were available online and to download (in Word and PDF).
4. A facilitated discussion guide for both surveys to support people carrying out the one-to-one or group discussions to capture people’s responses to the surveys. The opportunity for individuals to run facilitated discussions was promoted with our partners and supporters. Known activities drawing upon this resource included:
   • Communicate2U was a partner on the project and facilitated a discussion with their audience to ensure that people with learning disabilities had the opportunity to respond to the first survey.
   • For the second survey, the project team ran an online facilitated discussion, in partnership with the National Co-production Advisory Group at Think Local Act Personal, to facilitate engagement with people with experience of accessing occupational therapy services and carers.
   • A Steering Group member also conducted one-to-one discussions with seven men from ethnic minority populations to capture their responses to the second survey.
5. A presentation by the project lead to occupational therapy students at the University of Cardiff in October 2019 to support and encourage students to respond to the first survey.

To help us connect with as wide an audience as possible, we developed a network of around 100 supporters to the project, including 50 partner organisations. These included individuals, charities and networks of people affected by particular conditions and those working with particular minority ethnic groups. The Race Equality Foundation and Sporting Equals UK are two examples of organisations that we asked to share the survey with their networks.

To monitor the diversity of respondents to the two surveys, we asked people to provide additional information on a voluntary basis. This included where in the UK people lived (for example, Scotland, Wales, Northern Ireland and England), age range, how people would describe their gender, ethnicity and whether they identified as disabled. The diversity of respondents was monitored throughout. Where it was identified that we wanted to hear from more individuals from a particular population, we sought the advice of our Steering Group members and approached individuals from relevant organisations and networks to try to help us increase awareness of and engagement with the surveys.

927 people responded to the first survey of which 2.48% of responses came from people who identified as Asian/Asian British, 0.76% of responses came from people who identified as Black/Black British, 0.32% of responses came from people who identified as Chinese or another ethnic group and 2.3% identified as mixed/multiple ethnicities.

Of the 1,140 responses to the second survey, the proportion of responses from the BAME community was similar to the first survey, with approximately 2% of responses from people who identified as Asian/Asian British, 2% who identified as Black/Black British and 1% who identified as mixed/multiple ethnicities.

The proportion of the UK population that identify as Asian/Asian British is 7.5%, Black/Black British 3.3% and Chinese or other ethnic group is 1%.

The final stage of the project was the final prioritisation workshop, where we specifically invited applications from people who:

• Have accessed occupational therapy
• Are aged over 65
• Are young adults (aged 16-24)
• Are family and carers of people who have accessed occupational therapy
• Are from Black and minority ethnic groups
• Are from a variety of social backgrounds
• Are occupational therapists working in frontline practice or leading and managing frontline services

Invitations were extended to ensure that the participants would represent the four nations of the UK, a range of practice areas and contexts, a range of professional experience, and a range of perspectives across the lifespan and in relation to a range of lived experiences of the impact of physical and mental health challenges.

We learnt that it is a challenge to build strong relationships with other organisations in a short period of time for a very specific objective. We need to build trust with these organisations and their communities, and this takes time. In discussion with the Race Equality Foundation, we learnt that the response from members of the communities they serve was likely to be low without face-to-face contact. We continually monitored the responses to the surveys to identify any gaps and developed our networks reactively through personal introductions to try to optimise the diversity of people responding to both surveys and expressing an interest in participating in the final prioritisation workshop.

We also learned that effectively engaging with people with the diversity of experience and backgrounds that reflects the diversity of individuals who access and deliver occupational therapy services can be challenging. Additionally, a commitment is needed to work with trusted individuals who are already working with particular communities.

An open call for expressions of interest to participate in the final prioritisation workshop was publicised in OTnews, on the RCOT website, through RCOT newsletters and social media and via direct communications with a range of networks. It was also promoted to and through external organisations focused on Patient and Public Involvement (PPI), such as the People in Research website, to raise awareness of the opportunity among people who access occupational therapy and their carers/families.

RCOT received 79 expressions of interest: 25 from people with experience of accessing occupational therapy services and their carers/families and 54 from occupational therapists. From these, 10 people with lived experience and 10 professionals were invited to participate in the final prioritisation workshop. Invitations were extended to ensure that the participants would represent the four nations of the UK, a range of practice areas and contexts, a range of professional experience, and a range of perspectives across the lifespan and in relation to a range of lived experiences of the impact of physical and mental health challenges.

The second initial prioritisation survey opened on 26 February 2020 and was due to close on 14 April 2020, ahead of a final prioritisation workshop that was initially planned for 1 June 2020. The implications of the global pandemic required that we postpone the final workshop until 27 July 2020. The project team and the Steering Group took the opportunity to extend the window for responses to the second survey until 20 May 2020.  

The final prioritisation workshop was held virtually. This approach ensured that a wide range of people were able to safely participate and share their views in the facilitated discussions, despite the ongoing impact of the pandemic.

The top 10 research priorities remain relevant in the context of COVID-19. Each of the research priorities is broad and the focused research questions that will emerge from many of them can be applied to the impact of COVID-19 on society across the four nations of the UK. Whilst COVID-19 is a new disease, there are many healthcare challenges which remain constant and will continue to require the skills and experience of occupational therapists.

The Occupational Therapy Priority Setting Partnership followed the James Lind Alliance methodology. We had a first survey, open from 5 August to 5 November 2019, to gather questions, which was widely publicised and open to everyone to complete. People were invited to submit their questions about occupational therapy, these questions were then checked to see if they were already answered and refined into 66 questions. The Steering Group worked to ensure that the final 66 questions were in scope, considered fairly and stayed true to the respondents’ questions.

The 66 questions were then shared online in a second survey, open from 26 February to 20 May 2020, and people were asked to identify up to ten that they considered most important for research to answer.

The ranking of the 66 questions by people with lived experience and of professionals was scrutinised by the Steering Group. The decision was made that the top ten from each group (people with lived experience and people with professional expertise) were to be taken to the final prioritisation workshop, two questions were selected by both groups, resulting in a shortlist of 18 questions. The workshop was held on 27 July 2020, where 20 participants (10 people with professional expertise and 10 people with lived experience) spent a day in facilitated discussions to agree the final top 10.

Full details of the JLA methodology are set out on the JLA website.

The new top 10 priorities provide us with a means of focusing the efforts of the profession on research that matters most to the people accessing and delivering occupational therapy services. In the context of a profession with such a broad scope of practice, the nature of the priorities is to our advantage. Each of the top 10 priorities can be considered as a summary question, reflecting the individual questions submitted during the initial survey. There will be several, more focused research questions that will need to be answered to address each of the priorities. This means that the priorities can be applied to a wide range of conditions, symptoms, interventions, areas and contexts of practice, and so on, and across the lifespan and with particular communities amongst the population in mind. In due course, the data that informed each summary question will be available to view on the JLA website.

The longlist of 66 questions will be published on this webpage and on the JLA website and will be available to researchers and research funders to view. Other PSPs, such as the Palliative and End of Life Care PSP, have seen a number of questions from their longlists receive funding for research.

Identifying the top 10 research priorities is just the start of the process; the next task is to work on them. RCOT will use the priorities to set the agenda for funding available to members through the RCOT Research Foundation, which will help to focus efforts on addressing the top 10. RCOT will also seek to influence the funding opportunities available from other health and care related research funders.

RCOT will produce a final project report and will submit an academic paper for consideration for publication. We hope the final report will be available in winter 2020/21.

In the meantime, if you would like to read more about the project and methodology, you will find more information on this webpage or the JLA website.

The Royal College of Occupational Therapists is the professional body for occupational therapists in the UK and funded the project to agree the top 10 priorities for occupational therapy research in the UK. The World Federation of Occupational Therapists (WFOT) has previously undertaken work to identify the research priorities for the profession from a global perspective. These are available on the WFOT website.

In this podcast we follow one research priority, from its setting right through to its clinical application.

Listen to this podcast on Soundcloud, Apple Podcasts, Stitcher, Spotify.

Anne currently works at Great Ormond Street Hospital as Joint Head of the Occupational Therapy service and as a Clinical Specialist Occupational Therapist in Neurodisability. She is also a member of the National Executive Committee for the Children, Young People and Families Specialist Section of the Royal College of Occupational Therapy.

Dr Maria Avantaggiato-Quinn is Associate Allied Health Professional Director for Specialist Children’s Services at NTW FT and Principal Occupational Therapist. Previously an RCOT Council Member for England and Leadership Fellow of the Health Foundation, Maria represents service managers on the National Council for AHP Research and is also a carer.

Mary is an occupational therapist and has worked clinically in community and inpatient mental health services prior to moving to research. Her research interests are in community mental health occupational therapy.

Currently she is a Research Fellow and coordinator for the UKRI Loneliness and Social Isolation in Mental Health Research Network at University College London.

Michael is Associate Professorial Research Fellow in the PSSRU at the London School of Economics and Political Science. He is also Research Programme Manager of the NIHR School for Social Care Research. He is editor of the Journal of Long-term Care, was a member of the steering group for the Adult Social Work Research Priorities Setting Partnership, and was on the RCOT UKOTRF commissioning panel.

Katherine is Senior Adviser to the James Lind Alliance (JLA) and is chair of the Occupational Therapy Priority Setting Partnership (PSP) Steering Group. She has been a key contributor to the development of the JLA method since 2008 and has chaired and advised almost 40 PSPs internationally.

Edward is an Associate Professor in applied health research. He has worked clinically as an occupational therapist in a variety of mental health settings. Edward is the editor of two international occupational therapy textbooks. His current research focuses on the design, delivery, and testing of complex interventions in pre-hospital emergency care, in both the UK and sub-Saharan Africa.

Clenton Farquharson MBE has extensive knowledge of health and social care, and other social policy areas, particularly in relation to equality, diversity and co-production. Clenton is Chair of the Think Local Act Personal Board, a member of the Coalition for Collaborative Care Co-production Group and a Trustee of In Control. He is Director of the disabled people’s user led organisation, Community Navigator Services CIC, and acts as a Skills for Care Ambassador. Clenton is passionate about how we influence services to work together and to listen to the people who use the services.

Naomi is an occupational therapist with a specialist interest in dementia care and frailty. She is currently completing her doctoral research into improving mealtimes for people with dementia in the acute hospital setting. Naomi has worked in a variety of older persons care settings as an Occupational Therapist. Her current role is an Occupational Therapy Team Lead in a frailty rehabilitation unit for older people. This role includes improving the dementia pathway and research capacity within the service.

Diagnosed during her teenage years with Asperger’s and Post Traumatic Stress Disorder, Amy has focussed her work on prevention and shortening the health and social inequalities gap.

Aged 21, Amy was recognised as one of the top 15 leaders within Work and Education on the UK’s inaugural Autism and Learning Disability Leaders list 2018.

She has a number of roles across the NHS in Sussex, NHS England and Chairs the Parliamentary Inquiry Panel of Children and Young People’s Rights in Mental Health.

Dr Jane Horne is an applied health and social care researcher with an interest in rehabilitation, primarily, older people and stroke. She has worked in research for 10 years with leading senior academics who are occupational therapists by profession. She is the Research and Development lead for the RCOT Specialist Section for Neurological Practice and worked clinically in the NHS prior to joining the University of Nottingham in 2009. 

Dr Anne Johnson is a Consultant Occupational Therapist for the NHS and Macmillan Professional, Joint Clinical Lead of the Bath Centre for Fatigue Services and a Senior Lecturer, University of the West of England, Bristol. Specialising in long-term conditions management with a particular interest in ensuring ‘patient voice’ is represented in services provided.

Jenny Mac Donnell is the Project Lead on the Occupational Therapy Priority Setting Partnership. She has extensive experience of working in professional membership organisations on multi-disciplinary and collaborative research projects.

Sarah is a mental health service user and a keen supporter of the value of occupational therapy and of RCOT. She is also a Visiting Researcher in the Department of Biostatistics and Health Informatics, IoPPN, King's College London. Her academic background is in pure mathematics. She has also published research papers regarding clinical trials, computer science and psychiatry.

Vonnie McWilliams is manager of the Design Innovation and Assisted Living Centre in Northern Ireland and is the chair of RCOT’s Northern Ireland Regional Group.

Vonnie has expert knowledge and experience in the fields of catastrophic injury, neurology, physical disability, learning disability, oncology, chronic fatigue syndrome and ME, respiratory, dementia, respiratory, orthopaedics, and general medical conditions. She works with individuals and their carers across education, the NHS, care management companies, medico-legal companies, solicitors firms and voluntary agencies. Vonnie has also been a Cognitive Behavioural Therapist for the last 10 years.

Dr Sally Payne is an occupational therapist and Professional Adviser at the Royal College of Occupational Therapists. She has worked in the NHS with children and young people for many years and has a range of clinical, research and management interests. Sally’s PhD explored the lived experience of teenagers with developmental coordination disorder/dyspraxia.

Stephanie Platt is the Occupational Therapy Lead for Inpatient Mental Health Services in Stafford. She has worked in a wide variety of mental health settings over her career currently specialising in psychiatric intensive care.

Stephanie has recently completed a clinical academic internship through the NIHR and has commenced her MRes in Clinical Health Research. She is passionate about improving quality of life and outcomes for individuals experiencing mental health problems.

Dr Jenny Preston MBE is a highly experienced Consultant Occupational Therapist and non-medical Clinical Lead for Neurological Rehabilitation. Jenny combines clinical practice, research, education and strategic leadership within her role. She is an applied health researcher with an interest in neurology and the impact on everyday life.

In Scotland, Jenny is a key member of the neurological community contributing to the Healthcare Improvement standards for Neurological Care and Support (2019) and is a member of the Government’s National Advisory Committee for Neurology Conditions.

Isaac is a committed, community-minded individual who has worked within the third sector for many years, including local and national Government, with charities and the Think Local Act Personal initiative.

His primary focus lies in supporting a systematic approach to improving services for those who need them, ensuring communities' voices are embedded at every level through co-production.

Isaac has achieved considerable influence and success in reducing barriers faced by people with impairments and other seldom-heard groups, by exploring these issues in an open, honest, reflective and supportive way.

Alex is a Stroke Association Postgraduate Fellow based at the Division of Population Medicine, Cardiff University. He graduated as an occupational therapist from Cardiff University in 2011.

His research ranges across many aspects of post-stroke care, treatment and rehabilitation and is focused on how to understand the outcomes of care or treatment from a service user’s perspective. Within his fellowship role, he is investigating standardised patient-reported outcome measures (PROMs) and is trialling a method of making PROMs easier to complete for stroke survivors.

Michael Turner is a disabled person and has spent most of his career working the disability field. This has included many research and development projects, with a particular emphasis on user involvement and co-production. He helped set up the Shaping Our Lives national network of service users and disabled people and spent eight years working on co-production at the Social Care Institute for Excellence.

Ruth is the Project Coordinator of the Occupational Therapy Priority Setting Partnership. Ruth’s background is in managing projects in the international development sector. She has extensive experience of managing volunteers. She also volunteers in a personal capacity, as a lay representative for other health initiatives in the UK.

Dr Gillian Ward is the Research and Development Manager at the Royal College of Occupational Therapists. As an experienced researcher she has published in the area of enabling and assistive technologies for older adults.

As the Assistant Director – Education and Research at the Royal College of Occupational Therapists, Dr Jo Watson is responsible for leading and shaping the occupational therapy profession in the UK in terms of pre-registration education, continuing professional development, and the building of research capability and capacity to help expand the evidence-base underpinning professional practice. Jo is the strategic lead for the RCOT/JLA Priority Setting Partnership.

Phillip Whitehead is Associate Professor of Occupational Therapy at Northumbria University at Newcastle. Phillip’s expertise lies in the field of community occupational therapy spanning health and social care domains; his practice background is in adult social care services. He is particularly interested in the development and evaluation of interventions to promote wellbeing and prevent or delay the use of other health and social care services. His current research focusses on housing adaptations, double-handed homecare and intermediate care.