Disability Inclusion in Research Collaboration (DIRECT)
- Group summary: DIRECT is a global and interdisciplinary team of researchers committed to advancing disability inclusion in health research.
Disability inclusion webinar
Everyone is welcome to join our free webinar taking place at 15:00-16:30 BST on Monday 8th of June via Zoom. Sign up via Eventbrite.
We will outline key messages from our recently published call to action, including:
- Key challenges to disability inclusion in health research.
- Multi-level actions needed to address the challenges.
- Practical examples of work focused on advancing disability inclusion.
British Sign Language interpreting and real-time captioning will be provided. Slides will be shared before the webinar. The webinar recording and transcript will be shared after the webinar.
The webinar is being hosted by DIRECT, the NIHR Leeds Biomedical Research Centre (BRC), and the NIHR HealthTech Research Centre in Accelerated Surgical Care.
Please contact the NIHR Leeds BRC Patient and Public Involvement team on PPIBRC@Leeds.ac.uk with any questions or other accessibility needs for the webinar.
Our vision
We have come together across the globe to provide a platform to animate and inspire efforts to advance disability inclusion in health research. Our work is driven by disabled people and underpinned by the social and human rights models of disability. We use the term ‘disabled people’ here to align with the social model but respect all language preferences. We believe the choice of terms should always be determined by the people with lived experience being engaged.
Rationale
Globally, around one in six people experience disability. Disabled people have valuable skills and experiences to bring to health research but are often unjustly excluded from research studies and teams. This means ‘evidence-based’ changes in healthcare may be ineffective, inaccessible or unsafe for disabled people, and so risk compounding health inequities. Addressing these issues is vital to help ensure research has a positive and equitable impact in the real world.
What we do
We recently drew on existing literature and our lived and professional experiences to publish a global call to action for disability inclusion in health research. This sets out key challenges to disability inclusion in health research and our proposed actions for addressing them. Building on our call to action, we aim to:
- Raise awareness of challenges to disability inclusion in health research and drive positive changes to address the challenges.
- Conduct research focused on advancing disability inclusion in health research, including building the evidence base for effective change strategies.
- Monitor and take steps to promote inclusive research environments.
- Advocate for policy and research funding changes that advance disability inclusion in health research.
- Share best practice resources that provide practical guidance on disability inclusion in research.
Our efforts focus on three key challenge areas to disability inclusion we highlighted in our call to action.
Monitoring disability inclusion is essential to help understand disabled people’s health needs and ensure disabled people are included in policies and resource allocation. To support this, we aim to:
- Promote collection and reporting of disability data in health research.
- Support the development and uptake of disability data collection standards and measures that are inclusive, universal and international.
To help achieve high quality, impactful and equitable research, disabled people need to be included at all stages of the research cycle, right from conceiving research ideas through to implementing research findings in practice. To support this, we aim to:
- Promote meaningful involvement of disabled people as researchers and public contributors across all stages of the research cycle.
- Provide guidance and training on how to design and conduct studies that are accessible and inclusive for disabled people and address ethical challenges related to including disabled people in research.
Ensuring disabled people are included and represented in the research and advisory workforce is a key step for advancing disability inclusion in health research. To support this, we aim to:
- Promote collection and reporting of disability data for the entire research and advisory workforce.
- Support strategies focused on increasing inclusion and representation of disabled people across the entire research and advisory workforce.
Who we are
We are an interdisciplinary team of researchers from eight countries spanning the global south and global north. We have diverse lived experiences of disability, including physical, sensory and psychosocial disability and caring responsibilities. Our professional expertise includes disability advocacy and a range of research areas, such as participatory research, clinical trials, complex intervention development, law, design, realist approaches, and knowledge translation.
Co-leads
- Anna Anderson, University of Leeds, UK.
- Bonnielin Swenor, Johns Hopkins Disability Health Research Center, USA.
Operational lead
- Jasjot Maggo, University of Otago, New Zealand.
Core team members
- Jodie Bailie, University of Sydney, Australia.
- Barbara Bierer, Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard and Harvard Medical School, USA.
- Anna Brown, Massey University, New Zealand.
- Katherine Deane, University of East Anglia, UK.
- Willyanne DeCormier Plosky, Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard, USA.
- Anna Lawson, University of Leeds, UK.
- Rachelle Martin, University of Otago, New Zealand.
- Kaaren Mathias, University of Canterbury, New Zealand.
- Mrisho Mwifadhi, Ifakara Health Institute, Tanzania.
- Lieketseng Ned, Stellenbosch University, South Africa.
- Mildred Omino, University of Nairobi, Kenya.
- Sharad Philip, All India Institute of Medical Sciences, India.
- Amy M. Russell, University of Leeds, UK.
- Sameed Shariq, Imperial College London, UK.
- Victoria Shepherd, Cardiff University, UK.
DIRECT student intern
We are currently recruiting a student intern to support our DIRECT activities. The application window for the intern position has now closed.