In 2021, we published Best Research for Best Health: The Next Chapter, outlining our mission to improve the health and wealth of the nation through research. Essential to the success of this endeavour is ensuring we identify ways to reduce inequalities and maximise inclusion in everything we do.
To help us embed and achieve these goals we have developed a new, Research Inclusion strategy.
Our Research Inclusion strategy 2022-2027 will ensure we collaboratively implement inclusive practice in our research, culture and systems. It will at once enable us to address issues across the entire NIHR people framework (see Appendix 1), whilst empowering better health outcomes for the national and global community.
Our operating principle for inclusion
We are committed to equality, diversity and inclusion in everything we do. Diverse people and communities shape our research, and we strive to make opportunities to participate in research an integral part of everyone’s experience of health and social care services.
We develop researchers from multiple disciplines, specialisms, geographies and backgrounds, and work to address barriers to career progression arising from characteristics such as sex, race or disability.
Our first Research Inclusion strategy has been designed to consolidate our commitments in this space, embed best practice, and ensure that everything we do is aligned with our mission to improve the health and wealth of the nation through research. This strategy has been timed to coincide with NIHR’s new, multi-million-pound investment in inclusion and our change of name to the National Institute for Health and Care Research.
This is a formal recognition of NIHR’s enduring commitment to delivering transformative social care research since our foundation in 2006. It is also an acknowledgement of the important and often interdependent relationship between health and social care, which is an important inclusion consideration.
This strategy is focused on reducing inequalities and maximising inclusion across our entire people framework which includes NIHR’s workforce, our research workforce, advisory workforce, research participants and the public. Embedding this work within all facets of NIHR will help us foster an inclusive environment, engage the talents and energy of diverse people in all of our activities, and improve the relevance and quality of our research.
This strategy will empower us to build unstoppable momentum for positive change, both within NIHR and in the wider health and care research system. It has been designed to elicit a culture of continuous learning and improvement where the research skills of questioning, testing and evaluating are applied to embedding inclusion in all aspects of our operations. This will enable us to learn from our successes and failures, learn from others both within and outside our sector, and learn from the wider community.
We aim to inspire by example and to be recognised across the sector as leading from the front in reducing inequalities and maximising inclusion. This recognition is crucial - the more people consider NIHR a leader in this area, the more likely the requisite talent needed to fulfil our mission is drawn to us.
We need to learn from our successes and failures, learn from others both within and outside our sector, and learn from the wider community.
This strategy has been designed to address inequalities associated with numerous characteristics. Beginning with the protected characteristics of the Equality Act 2010, it extends to others which may also impact health and social care inequalities. The concept of intersectionality – a framework that acknowledges that all people have unique experiences of discrimination and disadvantage exacerbated by the overlap of multiple social identities – is also fundamental to this strategy. All these characteristics are outlined in Appendix 2.
This strategy also enables us to support DHSC in the disposal of its public sector equality duty.
We embark on this strategic journey at a time when, as a sector, we face significant challenges with implications for equality, diversity and inclusion. Matters that have been highlighted nationally and globally include concerns around inequitable funding; under-representation in research participation; complex cultural issues of bullying (pdf), harassment and victimisation; and imbalances and inequalities associated with sexual orientation, gender identity, socio-economic status, geographic location and ability to access health and social care. In addition, our systems and processes have sometimes benefited those from certain backgrounds.
We have already demonstrated our motivation for positive change through a number of approaches. For example, over several years we have successfully addressed long-standing barriers to career progression for female academics, so much so that today half of our research professors (and two-thirds of personal fellowship holders) are women.
More recent initiatives include:
- Elevation of inclusion to one of NIHR's 5 key operating principles in Best Research for Best Health: The Next Chapter – which signalled our first formal 10-year commitment to equality, diversity and inclusion
- Publication of our first Diversity Data Report in 2021, resulting in us making improvements to increase diversity on selection committees and the equality and inclusivity of our application process
- Launch of our NIHR Evidence website – making research accessible, relevant and informative for all
- Publication of NIHR INCLUDE guidance, to improve the inclusion of under-served groups in clinical research
- Delivery of the Race Equality Framework
This NIHR Research Inclusion strategy is founded upon a series of key themes and activities designed to enable everyone to work collaboratively to transform our approach to equality, diversity and inclusion. As we are tackling significant, complex issues, some of which are structurally embedded within NIHR and society as a whole, the realisation of the objectives of this strategy will take time. With so many components and considerations, improving equality, diversity and inclusion outcomes is always a cumulative process. Hence, adopting a learning approach, drawing on evidence and best practice from our partners and industry leaders, is imperative to its long-term success.
This strategy will outline the overall objectives, our delivery platform, approach to implementation and measurement, then outline the five key themes. Together, this will display our dedication and commitment to equality, diversity and inclusion and showcase the keys to success.
Adopting a learning approach, drawing on evidence and best practice from our partners and industry leaders are imperative to the long-term success of this strategy.
Our inaugural Research Inclusion strategy will run from 2022 until 2027. We aim to be open and transparent in the implementation of the strategy and will work across our entire people framework to embed inclusive practice across the NIHR. Engagement will come through our NIHR governance arrangements, specific governance for research inclusion, and regular consultation with our relevant stakeholders.
The four fundamental long-term objectives of our strategy, as identified in Best Research for Best Health: The Next Chapter are:
- Develop a robust evidence base to better understand those impediments in our systems and biases in our processes that have resulted in the under-representation in our research of some communities, including people from ethnic minority groups, disabled people, and LGBT+ people. We will introduce change programmes, for example as part of our fellowship and research professorship programmes, testing our plans with relevant communities to ensure we are deploying resources to the areas of greatest need.
- Improve the diversity of research participants in the studies we support and the voices of those who shape our research agenda, through championing inclusivity, redesigning our processes, introducing targeted initiatives and effectively monitoring and evaluating impact. We will ensure we reflect diverse interests in our processes through employing intersectionality.
- Embed diversity and inclusion in all our business processes. We will dedicate resources to the systematic tracking, reporting and evaluation of diversity within NIHR, including data regarding applications and awards for our research and training programmes, our workforce and the constitution of our committees and advisory boards, and the people who shape and participate in our research studies. We will use this data to set appropriate targets to diversify participation in our research and systems.
- Address behavioural and culture change in NIHR and the research environment, for example tackling bullying and harassment, through prioritising a cross-funder approach.
A successful approach will see an NIHR where:
- equality, diversity, and inclusion are embedded in our systems, culture and processes
- our research and advisory workforce is considerably more diverse
- access and participation in health and social care research are far wider
- everyone in the NIHR community visibly contributes to the ongoing delivery of the strategy
- an approach of learning as we go – about what works and what doesn’t, within the wider NIHR community, in and out of our sector, and beyond – is adopted across the board
Our ideal future is one where the consideration and addressing of equality, diversity and inclusion have become second nature to all members of the extended NIHR community.
This will be achieved through the adoption of five themes:
- Become a more inclusive funder of research
- Widen access and participation for greater diversity and inclusion
- Improve and invest in the NIHR talent pipeline
- Embed evidence-led diversity and inclusion approaches
- Collaborate with partners for impact and sustainability
Achieving the step-change required for a more inclusive and diverse NIHR will require the collaboration and energies of everyone across the NIHR. As such, our strategy adopts a long-term approach. This will empower all within the NIHR people framework to design and implement initiatives within their respective areas, whilst improving how we communicate equality, diversity and inclusion best practices.
Alongside our longer-term commitments to bring diversity and inclusion into our research, systems and culture, our strategy also sets out key short-term activities, which represent our first tier of initiatives for the next 5 years.
Although representing our starting point, the themes and interventions proposed in this strategy are intended to help position NIHR to make rapid progress when and where possible for future impact and culture change.
This ambitious strategy is intended to be a call to action for the NIHR. Implementation of the strategy requires a firm commitment from us all and will therefore be taken forward and supported by the Department of Health and Social Care, NIHR centres and everyone across our people framework.
Now that our Research Inclusion strategy is in place, we will soon publish the first in a series of action plans, which will outline our commitments for the delivery of the strategy. We will monitor, evaluate and review evidence to measure progress against the plan. This mechanism will enable transparency and accountability.
To collect monitoring data over multiple years, and to deliver long-lasting change and impact, we need to establish work programmes and projects. This will enable us to review how effective actions are and adapt to the changing needs in research and society. We will:
- Launch an NIHR-wide programme of actions, led by individuals across our people framework, organisations and other funders. Our programmes will be underpinned by the commitment and ambitions within the strategy.
- Collaborate with stakeholders to initiate sustainable projects and programmes.
Alongside the publication of this strategy, we will invite those interested in contributing to get involved. In line with our commitment to inclusion, we will invite people from a range of backgrounds and roles to lead and sponsor our diversity and inclusion activities.
We have already enacted a requirement to ensure that at least one applicant is female if more than one nomination is made.
- continue to publish our Diversity Data Report
- assess the effectiveness of policies and practices against an agreed set of outcomes
- report on delivery and implementation against action plans
- report on outcomes as part of the NIHR Outcomes Framework
Theme One: Become a more inclusive funder of research
We recognise that there are significant disparities in research that have resulted in inequitable health outcomes for populations with the greatest needs, caused by socio-economic factors, geography, age, ethnicity and other protected characteristics. NIHR plays a fundamental role in helping to reduce these disparities. We recognise that not everyone has the same starting point and that to become a more inclusive funder of research, we must address diverse needs effectively.
As one of the largest funders of health and social care research in the UK and stewards of public funds, NIHR will always strive to be more equitable. We recognise that achieving equitable research, that is more diverse and inclusive is essential to creating the excellent, innovative and impactful research necessary to advance knowledge and understanding and to respond to local, national and global challenges. Ultimately this will lead to better research, which in turn will lead to better health for everyone.
Our ambition is to fund more inclusive research undertaken by more diverse research teams, empowered by inclusive decision making about who and what gets our funding.
We have already introduced positive action statements in the promotion of funded programmes to encourage applications from diverse groups.
Our short to medium term activities include:
- Embed inclusion in all of NIHR’s business areas including funding programmes, personal awards, infrastructure projects and other functional areas
- Ensure that equity and inclusion are considered when allocating all NIHR funding, appointments of advisory board members and leadership positions
- Introduce the NIHR Inclusion Fund that will provide ring-fenced financial support for projects related to gender, disability, socio-economic background, geography, ethnicity and more
- Develop frameworks for inclusive research design and infrastructure
- Set aspirational diversity targets for committees and panels and review practices for opportunities to increase inclusivity
- Leverage government policies and strategies to drive commissioned and research-led calls that tackle health inequalities and the wider determinants of health (such as Levelling Up agenda, Women’s Health Strategy)
- Explore how we can encourage researchers to disaggregate research findings by sex
- Encourage funding applicants to reconsider the role of inclusion and show their commitment to developing and maintaining a healthy research culture
- Develop a policy and approach on the use of Equality Impact Assessments across NIHR
- Introduce an inclusion survey of our workforce to understand what further training, resources, guidance and support are needed to embed equality, diversity and inclusion throughout our culture
- Develop and implement an NIHR-wide equality, diversity and inclusion training plan for the NIHR workforce
- Augment our leadership development offer with focused learning on inclusive research and inclusive leadership topics
Theme Two: Widen access and participation for greater diversity and inclusion
To achieve our ambitions to become a more inclusive funder of research, NIHR must widen access and participation, enabling people from all backgrounds to join and engage with the NIHR.
An example of our current work in this area is our Be Part of Research online service, which helps people understand what research is and what taking part might involve, as well as helping people find studies and volunteer. While other significant projects to increase participation in research are underway at NIHR, additional work is required to initiate more inclusive recruitment strategies that promote participation from under-served groups nationwide. Improvements also need to be made in the area of public and patient involvement in identifying research priorities and in the research design process to ensure that studies are relevant and acceptable to participants.
To widen access for research participation, we will implement evidence-informed, targeted actions that enable under-served groups to take part in research.
Key activities in support of this theme include:
- capitalise on existing partnerships and programmes to ensure that patients shape research priorities
- introduce community-based recruitment, education, improved design, methods, data capture outcomes, and involvement of local stakeholders
- develop inclusive communications that encourage diverse health and care professionals, patients and the public to engage with research and which foster a diverse and inclusive culture throughout our people framework
- build capacity within our Local Clinical Research Networks to develop innovative delivery models which meet the unique needs of their regions
- foster and develop diverse and inclusive engagement with greater reach into the range of Lower and Middle Income Countries and UK Global Health Research programme stakeholders, including future applicants, committee members, the Community Engagement and Involvement Network and across the research pathway
Theme Three: Improve and invest in the NIHR talent pipeline
People from diverse backgrounds have historically been under-represented in the health and social care research talent pipeline.
The NIHR has implemented initiatives to address under-representation in research training awards. As a first step, we have introduced positive action statements in the promotion of funded programmes to encourage applications from diverse groups. We have also broadened the nomination process for Research Professors, allowing institutions to nominate up to three individuals to the programme, provided at least one applicant is from an ethnic minority background.
There is already a requirement to ensure that at least one applicant is female if more than one nomination is made. To address under-representation, we make a commitment to improve diversity by building capacity within our talent pipeline.
Our short to medium term activities in support of this theme are:
- implement innovative approaches to engage and train undergraduates from diverse backgrounds, potentially helping them on the road to becoming future contributors to the NIHR
- introduce the NIHR School of Outreach, to widen participation
- broaden the reach and scope of the NIHR mentoring programme, with a particular focus on supporting underrepresented groups
Theme Four: Evidence-led diversity and inclusion
As a research organisation, the NIHR is committed to an evidence-led approach. As such, we are committed to embedding evidential practice in all of our research inclusion work. This is more than just collecting and analysing diversity data. Our evidence-led approach to research inclusion will help us design the strategies and practices required to improve diversity and inclusion across our people framework, our policies, processes and our culture.
In 2021, NIHR published its first Diversity Data Report. The data provided evidence that we are not fully representative of the society we serve. In light of these challenges for the NIHR, robust, high-quality qualitative and quantitative data is required to ensure that our activities are effectively targeted, impactful and sustainable.
Building on the publication of data in 2021, we will:
- continue to systematically collect, analyse and review data for all aspects of our business
- co-ordinate the collection, analysis and publication of study participant data
- improve transparency of NIHR awards by publishing data on award holders by diversity characteristics and other areas including value of award and geographic location
- launch the NIHR diversity and inclusion data dashboard to improve transparency, monitor trends, disseminate reports and provide relevant information to help our people make better decisions
- introduce the NIHR gender and ethnicity pay gap report
- identify and leverage partnerships with external stakeholders (e.g., professional societies, advocacy groups, etc.) and private industry to identify and promote best practices and to collect robust evidence
- incorporate diversity and inclusion data in the NIHR Outcomes Framework, ensuring we are tracking our progress as a key organisational outcome
Theme Five: Collaborate with partners for impact and sustainability
We want to transform research culture and establish NIHR as a nationwide leader for inclusion. To achieve this, we need to learn from other funders and strategic partners – nationally and globally – who may be further into their inclusion journey and develop and share key insights with them.
The NIHR is collaborating with funders to tackle bullying and harassment in research and innovation. We have also launched our policy on preventing harm in research, which outlines our expectations for organisations that hold NIHR awards.
Our short to medium term activities include:
- map and engage key external stakeholders for example NHS England, NHS Race and Health Observatory, UKRI, Wellcome, Association of Medical Research Charities, universities and industry.
- establish the NIHR Inclusion Forum for sharing good practice and cross-sector standards for diversity and inclusion.
- continue to work alongside NHS England and the NHS Race and Health Observatory to increase the participation of people from ethnic minorities in clinical trials and research through methods such as promoting the INCLUDE Ethnicity Framework in line with policy as set out in ‘Inclusive Britain: government response to the Commission on Race and Ethnic Disparities’.
- develop and share our policy position statements to support inclusion.
To fulfil our mission to improve the health and wealth of the nation through research, NIHR must foster an inclusive environment, engage the talents and energy of diverse people in all areas of our work, and ensure all groups of people are appropriately represented and addressed, both within our research and in how we report and distribute our research findings.
Building momentum for reducing inequalities and maximising inclusion will take time, which is why this strategy has been designed to empower continuous improvement and engender cumulative progress. As such, we will continue to involve stakeholders across the NIHR people framework, partners and industry in the implementation of this strategy. In line with our themes of being evidence-led and collaborative, we will evaluate, learn, refine and develop our approach as we progress.
In short, the more that we engage, the more we will learn, and the more effective and impactful our Research Inclusion strategy will be, both inside and outside the confines of the NIHR community. The more we learn, the easier it will be for us to set a positive example in our sector and beyond; this is vital in ensuring the requisite talent is drawn to NIHR and in improving participation rates in our research amongst under-served groups. Both are vital in fulfilling our overall mission.
Although some initiatives outlined in this strategy are currently underway, and others are ready to begin, we will formalise all of our inclusion activities in a strategy action plan by the end of 2022. As with our Research Inclusion strategy 2022-2027, our action plan will be designed to evolve based on evidence, learning and development. The Research Inclusion action plan will be what we need to achieve to turn our vision and mission into reality.
Appendix one: NIHR's People Framework
The success of NIHR’s Research Inclusion strategy will depend on contribution, activity and leadership across our entire people framework. This includes NIHR’s workforce, our research workforce, advisory workforce, research participants and the public - see diagram.
Consistent with the Equality Act 2010, our strategic aims for inclusion are focused on addressing inequalities associated with the following characteristics:
- gender reassignment
- marriage or civil partnership
- pregnancy and maternity
- religion or belief
- sexual orientation
We are also concerned about imbalances and inequalities associated with:
- socio-economic status
- geographic location
- access to health and care
In addition to these priorities, NIHR will specifically consider intersectionality, recognising that multiple social identities overlap to exacerbate the experience of inequities. We also recognise that depending on the context, there are numerous additional characteristics to consider to improve inclusion in research. Consideration of all relevant characteristics is integral to our mission to improve the health and wealth of the nation through research, and is supported through this strategy.
Our ideal future is one where the consideration and addressing of equality, diversity and inclusion have become second nature to all members of the extended NIHR community.
Appendix 3: Terminology
Equality: Ensuring that everyone is given equal access to resources and opportunities to utilise their skills and talents.
Equity: Trying to understand and give people what they need to achieve their potential; promoting notions of fairness, justice, entitlements and rights.
Diversity: Being reflective of the wider community. Having a diverse community, with people from a broad range of backgrounds represented in all areas and at all levels.
Inclusion: An approach where groups or individuals with different backgrounds are welcomed, culturally and socially accepted, and treated equally. Engaging with each person as an individual. A sense of belonging that is respectful of people for who they are.
Research Inclusion: Taking a whole systems approach to what we do and how we do it; identifying and removing long standing, structural barriers to success across our people, policies, processes and practices (the synergistic totality of our inclusion endeavours).
Intersectionality: A framework that acknowledges that all people have unique experiences of discrimination and disadvantage exacerbated by the overlap of multiple social identities.
Under-served groups in research: The NIHR INCLUDE project identified the term ‘under-served’ by diverse stakeholders including patients and the public as the most appropriate term through a consensus workshop. The term has subsequently been adopted by the NIHR and more widely. The term reflects the perspective that the research community needs to provide a better service for people in these groups – the lack of inclusion is not due to any fault of the members of these groups. The term ‘under-served’ reminds us of this perspective in a way that alternative terms such as ‘underrepresented’ do not.
The work of the NIHR INCLUDE project shows that there is no single definition for an under-served group.
Some key characteristics that are common to several under-served groups are:
- lower inclusion in research than one would expect from population estimates
- high healthcare burden that is not matched by the volume of research designed for the group
- important differences in how a group responds to or engages with healthcare interventions compared to other groups, with research neglecting to address these factors
The key idea here is that the definition of ‘under-served’ is highly context-specific; it will depend on the population, the condition under study, the question being asked by research teams, and the intervention being tested. No single, simple definition can encompass all under-served groups.