This NIHR Disability Framework sets out our commitment to disability inclusion. It forms a key part of our Research Inclusion Strategy 2022-2027. We want to make sure that our processes, activities and systems are accessible and do not present a barrier to engagement. This Framework sets out the context for our work, and details our short term priorities, aimed at improving inclusion of disabled people. Our short term actions are set out in the final section.
As outlined in Best Research for Best Health: The Next Chapter, inclusion is a key operating principle for the NIHR. We know that historically there have been barriers in the NIHR’s systems and processes which have made it more difficult for disabled people to work with us. An increased focus on disability inclusion will mean that disabled people are better able to engage with our systems and communications. This will mean that disabled people will more easily be able to apply for our funding, take part in NIHR funded research, and receive required support.
In this Framework, we use the term ‘disabled people’ to refer to individuals who have impairments or (long term) conditions. This could include physical impairments or mobility issues, visual impairments, Deaf individuals, neurodivergent individuals, and individuals with mental health conditions. We recognise that not all of these individuals will identify as ‘disabled’, and that some disabled people may not have formal diagnoses. We also acknowledge the importance of individual experience, and recognise that 2 people with a similar impairment or condition may experience different barriers. These barriers might affect what support is required to engage with the NIHR.
Our vision
Our vision for disability inclusion at the NIHR is that we become a funder that is more inclusive of all individuals. A more inclusive and accessible NIHR does not only benefit disabled people. By examining our processes and ways of working, the NIHR will become more inclusive for everyone.
Achieving this vision means NIHR will:
- leverage the value added by disabled researchers, research participants, and colleagues
- facilitate person-centred ways of working
- acknowledge and celebrate individuality of lived experience, making sure that disabled people have a voice
- welcome, support and ensure that disabled people can contribute to our mission of improving the health and wealth of the nation through research
Our ultimate goal is that disabled people can engage with and benefit from all of NIHR’s activities, with ease.
How have we developed this Framework?
We have developed this Framework in line with the social model of disability. This model proposes that disability is caused primarily by systemic or societal arrangements and not by impairments or conditions themselves. This is a helpful lens for us to reflect on and to proactively adapt our processes to identify and remove barriers. We will ensure that NIHR staff have the knowledge and skills required to understand how to remove these barriers.
This Framework has been developed with a focus on engagement. The NIHR Disability Inclusion survey was run in 2023, and received over 400 responses. We also held a range of focus groups with both disabled people and our own programmes teams. Learnings have also been taken from other engagement projects focused on disability. A Diversiti UK survey and focus groups, commissioned by the NIHR in 2022, asked about the experiences of disabled public contributors at the NIHR. We are very grateful to all who took part in these surveys and focus groups, and those who have shared their views and experiences with us in other ways. Our approach has also benefited from the expertise of academics at the University of Sheffield and London School of Hygiene and Tropical Medicine, and from Disability Rights UK.
What will we focus on?
An inclusive culture at the NIHR requires a proactive approach to removing barriers in our systems, processes and practices. To enable this we need to make sure all of our colleagues have access to training and information in relation to disability inclusion. We also need to recognise and share areas of good practice that already exist within the organisation.
2 key areas which emerged from our engagement, that NIHR needs to focus on:
- Inclusive ways of working
- Training and knowledge building
These 2 areas inform our near-term actions, set out at the end of the Framework.
Inclusive ways of working
We want to make sure that disabled people feel welcomed, supported, and encouraged to engage with us. To achieve this, we must ensure a consistent approach to inclusive ways of working across the NIHR. This must be the case however individuals engage with us. This ambition is already supported by a number of initiatives and processes that we developed in 2023. This includes our Equality Impact Assessment approach , and a number of pilot projects to embed inclusion in our advisory committees and panels. Our work in this space is underpinned by our aspirational targets which provide a target of 7% for disabled people on our committees and panels by 2027.
We know that there is more to do. NIHR’s Diversity Data Report 2022 showed that overall, only 3% of our current award holders had shared with us that they are disabled. This is lower than the Higher Education Statistics Agency rate for that same year, with 4.8% of Higher Education Institutions staff having shared information about a disability. Further, we know that only 3% of our current professional committee and panel members have shared with us that they are disabled. In some areas, representation of disabled people is higher. For instance, 30% of our public committee members shared that they have a disability, compared to 23% in the working age population. But, we must focus on increased representation of disabled people across all of the NIHR. To do this, we know that we cannot only focus on recruitment of disabled people. We need to make sure that we assess our current processes to identify barriers and remove them.
NIHR has a duty to make reasonable adjustments, and respond to access needs. We will take an anticipatory approach to reasonable adjustments, recognising that one size does not fit all, and that we need to remain flexible. The approach we take must be consistent and successful in practice, and should not place burden on disabled people.
Through the Research Inclusion programme, we will:
- co-develop a standard anticipatory approach to to reasonable adjustments
- develop guidelines for our colleagues which set out our approach to disability inclusion
- ensure that all funding and recruitment calls contain information on, and a contact for discussions about, reasonable adjustments
- examine and develop our grant management systems from an accessibility perspective, seeking the views and expertise of people who use assistive technologies
- explore and implement processes which ensure that disabled people do not have to repeatedly ask for inclusive ways of working
- assess and implement the lessons learned from pilot projects seeking to make committees and panels more inclusive for disabled people
- explore ways of allowing disabled people, and non-disabled people, to share their communication needs and preferences, in ways which increase inclusivity
Training and knowledge building
Central to the NIHR’s progress in relation to disability inclusion is providing people with opportunities to develop their knowledge, awareness and skills. There has been some ad-hoc training over the last year on reasonable adjustments and disability inclusion. We will build on these sessions, and ensure that cross-NIHR training is developed to support our colleagues and make sure that disabled people are receiving consistent levels of good support and understanding.
Not all conditions or impairments are visible. We know that central to becoming more inclusive, is an increased understanding of hidden, or invisible disability. The NIHR Disability Inclusion Survey told us, of the respondents sharing information about an impairment or condition:
- over 30% of respondents had a mental health condition
- over 20% of respondents were neurodivergent
- more than 50% of respondents had multiple impairments or conditions
Increasing colleagues’ awareness and understanding of how multiple conditions might affect individuals, and may fluctuate or be episodic, is also important. We will make sure that understanding of multiple conditions, and intersectionality with other characteristics form part of training offers.
It is not only our researchers, public contributors and colleagues that may face barriers to engaging with us. Disabled people also face barriers to participation in research. We must equip researchers with the understanding of barriers which might be present in recruitment to clinical trials and research studies. Recruitment to studies can be made more inclusive by presenting information about research in accessible formats, or summarising research in Plain English. NIHR Evidence already does this in relation to research findings.
Through the Research Inclusion programme, we will:
- develop training materials and learning opportunities across the NIHR, which encourage understanding of reasonable adjustments, inclusive practice and line management, and ableism; underpinned by the social model of disability
- continue to offer regular training on Equality Impact Assessments, and encourage the use of these as a tool to proactively identify and mitigate potential barriers in our processes and ways of working
- develop internal guidance on accessibility for events, meetings and data reporting systems
- build capacity across the NIHR by creating local disability champions who can advise and support colleagues
- review standard meeting guidelines and local office procedures to ensure they are in line with good practice
- provide information to researchers in the form of training sessions, about inclusive research design and communication
- work with others in the sector to ensure that good practice is shared and adopted
How will we measure success?
We will measure progress in a number of ways. Our approach to diversity data will help us to identify increased representation of disabled people across all areas, and at all levels. We updated our diversity data question set in 2023. We now ask 2 questions relating to disability, which we hope will allow us to gain insights about individuals who may meet the legal definition of a disabled person, but who do not identify as disabled. We are also tracking our progress against the aspirational targets set in 2022.
We will continue to gather examples of good practice, and encourage the sharing of good practice across the NIHR including in our infrastructure and in our funded awards. We will also track the number of people engaging with, or attending, training provided on reasonable adjustments.
We also encourage and welcome feedback on processes and practices from disabled people, and hope that as our work continues to progress, fewer barriers to engagement are experienced.
Our short term actions
As this is the first time that we have developed a Framework for disability inclusion, our commitments will be implemented over time.
In the short-term, we will undertake a number of key activities, including:
- developing learning resources and training focused on reasonable adjustments, ensuring all NIHR staff have the opportunity to attend a training session
- undertaking an examination of the NIHR grant management systems to make sure that accessibility issues are identified and addressed
- developing standardised guidelines for use across NIHR on our approach to reasonable adjustments
- improving collection of disability data as part of the NIHR Diversity Data programme of work
Our progress against these actions will be reported to the NIHR’s Research Inclusion Programme Board. We will review our progress annually, and will continue to revise and adapt our activities as our work and understanding progresses. Highlights will be included in our annual progress reports, which will be published on our website.
Contact
To discuss this Framework, or to ask any questions, please email the Research Inclusion team: researchinclusion@nihr.ac.uk