EDI Strategy contents

  • Embedding EDI within our activities both aligns to our values and contributes to HDR UK’s mission to accelerate trustworthy data use within a thriving health data ecosystem. As an employer and research institute, we are committed to building a diverse and inclusive community. We recognise that drawing on diverse voices and identifying and tackling inequities in our systems and processes is integral to achieving our mission. We recognise that to provide leadership as a national body, we must embed EDI within our own systems, policies and processes and be transparent in our progress and reporting.

    As the national institute for health data science, we are committed to addressing the national health data science skills gap (Medical Research Council, 2022; Sudlow, 2024) and to ensuring that current and future health data scientists are equipped with the skills to understand and apply data science to the challenges ahead. The existing and potential future workforce are drawn from multiple and intersecting disciplines – mathematicians, scientists, data analysts, engineers and others – rather than a single disciplinary pathway – and we recognise that underrepresentation of different demographics across these sectors intersects with health data science skills gaps. Our drive towards developing an inclusive, interdisciplinary research culture is key to creating the conditions for the health data research community to have fulfilling careers which maximise their potential. 

    Furthermore, as the national institute for health data science, HDR UK is committed to ensuring health data used for research is representative and we recognise that facilitating access to diverse and representative data enables better science. Building technical infrastructure provides opportunities to embed infrastructure that is inclusive and access to health data that is more equitable. Working with our partners to co-create inclusive research across the entire research journey provides opportunities to more effectively identify, better understand and address social and environmental determinants of health disparities, within both research and teaching.  

  • By equity, we mean recognising the existence of systemic social barriers, inequalities and privileges and the need to proactively reduce or remove them.  

    By inclusion, we mean creating an inclusive research and working environment, which everyone feels a part of and is encouraged to participate, engage and thrive within.  We also mean inclusive research which ensures that studies are carried out by everyone for everyone. 

    By diversity, we mean the diversity of identities within a group of people, such as our employees, within our decision-making and in our partners, and as represented within health data research.  We do not limit our understanding of diversity to protected characteristics as set out in the Equality Act 2010. Diversity includes everything that makes us unique from our backgrounds and experiences to neurodiversity, our personalities and ways of thinking and including, for example, socio-economic status, geographic location, caring responsibilities or being a care leaver. 

    (See glossary below for further terms).

  • We are guided in our work by HDR UK’s organisational values of Transparency, Optimism, Respect, Courage and Humility. Our approach to progressing our commitment to EDI will be underpinned by the following EDI principles, which align with HDR UK’s organisational values. The aim is for these principles to be broad and strategic so they can be applied across the organisation, reflecting HDR UK’s different roles (see Figure 1 pictured below under ‘EDI in practice at HDR UK’).

    Table 1 – EDI Principles 

    Transparency  

     

    		 We will be transparent in applying an intersectional and evidence-based approach to identifying inequities, under-representation, biases in processes and / or barriers to inclusive cultures.   We will be transparent on accountability, decision-making and resourcing of EDI work through our EDI governance and HDR UK delivery reporting processes. We will facilitate a representative EDI governance structure to enable a range of perspectives to be heard (both lived experience and across HDR UK central and programme teams) and by engaging and working in partnership with our stakeholders.   We will be transparent in how we evaluate, monitor progress and report on our EDI work.  
    Optimism  

     

    		 We will continue to be optimistic about HDR UK’s role as a health data research institute in tackling health inequities and the value of pushing the boundaries of EDI, while being realistic about our levers for change and influence. As such:  

    • We will ensure EDI is embedded across HDR UK systems, policies and processes drawing on our evidence base and equality impact assessments. 
    • We will also champion EDI in our delivery programmes – by being proactive in addressing inequities through positive action and by enabling research impact and development of use cases aligned with HDR UK’s strategy. 
    Respect   We aim to ensure that everyone in our community is treated, and treats others, with dignity and respect, in line with our anti-bullying and harassment policies for our employees and the HDR UK community.  We will ensure that trustworthiness and respect underpin our evidence-based approach to progressing EDI. 
    Courage  

     

    		 Through our role as the UK’s health data research institute, we will clearly articulate our approach and aspiration to push the boundaries of EDI in health data research. 
    Humility    We recognise that enacting our commitment to EDI, as a research institute and as individuals, requires humility, empathy, continuous learning and critical reflective practice. We are committed to raising awareness and creating spaces through which we can all engage in ongoing learning and which enables everyone to embed EDI within their roles. 

     

  • As set out in section 1, we aspire to support inclusive health data science and research, to facilitate inclusive research and work environments, to contribute to diversifying the health data research and research adjacent community, and to ensure research is carried out by everyone for everyone.  

    As a complex organisation, distributed across many delivery partners, we recognise the importance of our employees and our wider community in implementing both our broader strategy and EDI aspirations. Across these groups, HDR UK has differing roles in progressing EDI – as an employer, a research institute and a national body (see figure 1 pictured to the right).  Our EDI strategy has been developed recognising these different roles and the different approaches required to progress EDI and leverage change across each.  

    Furthermore, through implementation of our EDI strategy, we will recognise the importance of context – including for example the different legislative context across the four nations and the importance of different community experiences, of historical harms and how this shapes engagement and approaches to trauma-informed spaces for inclusion.    

    As a relatively young organisation, we continue to establish and embed our approach to EDI. As such, our EDI strategy provides a broad framework to anchor and embed our work to progress  EDI, that everyone within the HDR UK community can relate to and draw on as a guide to embedding EDI within their work. This is summarised in Figure 2 (pictured to the right) and expanded on below.

    We do not identify specific objectives within this strategy document. These will be developed and reported on by teams as part of our annual standard delivery planning. Our EDI governance mechanisms will ensure coordination, monitoring and coherent reporting of such EDI activities among different parts of the organisation (see section entitled ‘Monitoring, reporting & measuring impact’ below). 

    • Develop a diverse workforce and create an inclusive work and research environment 

    We will build on the work we have undertaken to date to develop our diverse directly employed staff – such as use of anonymous shortlisting within our recruitment practices. We will use an evidence-based approach to evaluate our current practices at each stage of employee lifecycle (recruitment and selection, development and exit) to ensure we understand barriers experienced and at different career stages.  

    We will also explore and establish an evidence base on the diversity and inclusion of the wider HDR UK Community. (Note: in this context the HDR UK Community is defined as the wider group of researchers and support staff, involved in delivering HDR UK work and embedded across partner organisations.) We will assess the diversity of the wider HDR UK Community and determine the extent to which our community experiences an inclusive work and research culture in their work to deliver HDR UK’s strategy to facilitate evidence-informed actions to drive improvements.  

    We will also provide evidence-based thought leadership in developing capacity for more inclusive health data research as well as addressing under-representation in the health data research community. 

    • Ensure equitable processes 

    We aspire to ensure more equitable processes by examining the impact of our decisions, policies, processes and our engagement activities (such as our public engagement activities) for different groups. We will do this by developing and implementing our approach to equality analysis and impact assessment and ensuring EDI is considered within our due diligence processes. We will also work towards embedding accessibility considerations within our digital content. 

    • Ensure equitable partnerships and diversity in decision-making 

    We aspire to foster equitable partnerships and diversity in decision-making and programme delivery within the UK and globally. Working in collaboration with our partners, we aim to develop infrastructure that addresses the challenges of data sharing (across organisational and national boundaries). We recognise the disparities in opportunity, resource or capacity between countries and communities on a global basis, as well as within the UK. We will build on our previous experience of working collaboratively as equal partners, for example through the International COVID-19 Data Alliance. We will continue to build networks and communities of practice to learn from each other and share best practice that intentionally supports researchers to engage with parity and develop more equitable access to trustworthy data and infrastructure.  

    We recognise the importance of communities, patients and the public having confidence in our activities. We will continue to include public and patient representatives in our decision-making processes and aim to embed greater diversity within our decision-making. For example, as set out in our Patient and Public Involvement and Engagement Strategy, we will develop and implement strategies to enhance the diversity of our Public Advisory Board.  

  • Embedding EDI within our activities contributes to HDR UK’s mission to accelerate trustworthy use of health data to enable discoveries that improve people’s lives. It also contributes to developing a thriving health data ecosystem. 

    Note: the use of AI (alongside other advanced analytic approaches) will be considered across strategic objectives in alignment with HDR UK’s AI strategy, currently in development.

    Table 2 – Developing an EDI framework that aligns to HDR UK’s strategy (Detail):

    1. ACCELERATE TRUSTWORTHY DATA USE by sorting the data  Facilitate diverse data for better science 

    • Find and access diverse/ity data, where possible, in the UK and globally 
    • Build technical infrastructure that is inclusive and enables equitable access (e.g. the use of federated analysis across data repositories) and integrate public involvement into technological developments. 
    • Provide data curation skills and resources that enable inclusive research 
    • Contribute to and enhance ‘Diversity’ Data standards 
    2. IMPROVE PEOPLE’s LIVES by unlocking the power of data  Co-create and showcase inclusive health data research 

    • Co-create inclusive research across the entire research journey (e.g. through our Driver Programmes and regional networks)  
    • Share use cases on inclusive research 
    • Test infrastructure to ensure it is inclusive and enables equitable access 
    • Strengthen our public engagement of underserved groups by evaluating our public engagement activities through an EDI lens 
    • Use inclusive approaches to demonstrate trustworthiness, promote confidence in the ethical use of health data and respond to concerns of underserved groups 
    3. SHAPE THE FUTURE of health data research  Capacity building for diversity and inclusive research – in the UK and globally 

    • Contribute to increasing the diversity of future health data researchers/scientists 
    • Develop the skills of current and future health data scientists / researchers including promotion of core inclusive health data research skills 
    • Develop the capacity of current and future health data scientists to embed EDI within Patient and Public Engagement and Involvement (PPIE)  

  • As we mature our approach to progressing EDI, we will use tools that aid implementation of our EDI strategy in a systematic way. These tools include a more formalised EDI governance structure, a more standardised approach to developing our evidence base, being intentional in our EDI communications and engagement and establishing processes for monitoring, evaluation and reporting on progress. 

  • Roles and responsibilities for EDI are provided in Table 3, visualised in Figure 3. Our EDI steering group will provide a sounding board and a dedicated space to develop and calibrate EDI work; in so doing providing leadership and strategic direction on EDI activities for HDR UK and ensuring coordination among different parts of the organisation.  

    Figure 3 – EDI governance and responsibilities (visual) 

    Table 3 – EDI governance and responsibilities 

    Board  Provides external scrutiny, expertise and insight. 
    SLT  To provide visible leadership and accountability, sponsorship role on EDI Steering Group 
    HDR UK’s advisory boards, such as the Public Advisory Board  To provide advice to the EDI Steering Group on a regular basis. 
    EDI Steering Group  To provide a space to develop and calibrate EDI work, in so doing providing leadership and strategic direction on EDI activities for HDR UK and ensuring coordination among different parts of the organization. The EDI Steering Group members act as representatives for HDR UK teams, staff and the wider community, bringing different skills, knowledge, and experiences, to review and steer progress on EDI at HDR UK. Embedded within HDR UK’s governance structure, the Group is accountable to SLT and ultimately HDR UK Board.   

    [Link to EDI Steering Group Terms of Reference – to be added] 
    Internal Networks  To raise awareness, create safe spaces for discussion, raise concerns via representation on EDI Steering Group 
    Heads of Department / Programme Directors  To embed EDI into teams, department planning, supporting staff development 
    All staff  To develop own awareness and knowledge and by embedding EDI into own roles and to work in line with HDR UK’s anti-bullying and harassment policy.  

  • We will:  

    • Standardise, where possible, our approach to diversity data monitoring, drawing on both quantitative and qualitative methods.  
    • Develop an approach to equality impact assessments for policy and process reviews. 
    • Publish our diversity data annually alongside our plans to address identified inequities and respond to potential biases in our processes which may create barriers to an inclusive work and research culture.  
    • Utilise a Theory of Change approach, where appropriate – for example when developing positive action initiatives, to provide “a comprehensive description and illustration of how and why a desired change is expected to happen in a particular context” (EPSRC, 2022). 

  • Through our EDI communications and engagement activities, we will:  

    • Meaningfully engage with HDR UK staff, community and partners on the development, implementation and monitoring of our EDI strategy and related work.  
    • Be intentional in our approach to increasing the knowledge, skills and understanding of EDI issues to enable everyone to embed EDI within their roles and responsibilities. 
    • Demonstrate EDI thought leadership to our wider community.

  • Our EDI Strategy will be reviewed in line with any legislative changes and will align with HDR UK’s strategy timeline, with annual assessments of our progress.   

    Drawing on this EDI strategy as a framework to anchor and embed our work to progress EDI, we will collate and monitor our EDI activities through our organisation wide strategic and operational planning. Through a coherent programme of work, we will evaluate the performance and impact of our strategy and draw on our evaluation to inform our future activities and plans. 

    We will report and share our progress annually, including an annual diversity data report, to our Board, Public Advisory Board and all staff. 

  • The Equality Act (2010) legally protects people from discrimination in the workplace and in wider society. The Act sets out protected characteristics – meaning the personal attributes against which it is illegal to discriminate.  The defined protected characteristics are age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex, sexual orientation.  

    The Public Sector Equality Duty (PSED), which applies in Great Britain (England, Scotland and Wales), is a statutory duty required of listed public authorities and other bodies carrying out public functions or supported by public funding.  

    HDR UK is a registered charity and we are committed to meeting the general and specific duties as set out under the PSED to support our EDI aspirations.  

    The PSED includes general and specific duties. The general duty requires public authorities, when carrying out their functions, to have due regard to the need to: 

    • Eliminate unlawful discrimination, harassment, victimisation and any other unlawful conduct prohibited by the act. 
    • Advance equality of opportunity 
    • Encourage good relations between those who do and do not share protected characteristic. 

    The specific duties help decision-makers to perform the general duty more effectively and are guided by the size of the organisation. While the specific duties are devolved in Scotland and Wales, English public authorities and those with cross-border responsibilities are required to: 

    • With fewer than 149 employees – publish one or more equality objectives at least every 4 years and to annually demonstrate and publish evidence of compliance regarding people affected by the organisation’s policies and practices. 
    • With 150 and more employees – in addition to the above, publish information on general duty compliance with regard to your employees annually. 
    • With 250 and more employees – publish gender pay gap data by 31 March every year. 

    Northern Ireland is covered by Section 75 of the Northern Ireland Act 1998. In summary, a public authority shall, in carrying out its functions relating to Northern Ireland, have due regard to the need to promote equality of opportunity between:  

    • Persons of different religious belief, political opinion, racial group, age, marital status or sexual orientation.  
    • Men and women generally.  
    • Persons with a disability and persons without.  
    • Persons with dependents and persons without. 

    A public authority shall in carrying out its functions relating to Northern Ireland have regard to the desirability of promoting good relations between persons of different religious belief, political opinion or racial group. 

  • Equality means ensuring everyone has equal opportunity to succeed and that people are not treated differently or less favourably based on a specific protected characteristic.  

    Positive action – Recognises that some people may experience disadvantage or be underrepresented in certain activities connected to a protected characteristic. Positive action, as set out in the Equality Act, allows measures to be taken that may involve treating one group that shares a protected characteristic more favourably than others, where this is a proportionate way to enable or encourage members of that group to overcome disadvantage or participate in an activity. Positive action should not be confused with positive discrimination, which is illegal, i.e. treating a particular group more favourably in a way which does not meet the positive action statutory requirements in the Act. 

    Intersectionality is “a lens, a prism, for seeing the way in which various forms of inequality often operate together and exacerbate each other. We tend to talk about race inequality as separate from inequality based on gender, class, sexuality or immigrant status. What’s often missing is how some people are subject to all of these, and the experience is not just the sum of its parts.” Crenshaw, 2020 

    Neurodiversity “Neurodiversity describes the idea that people experience and interact with the world around them in many different ways; there is no one “right” way of thinking, learning, and behaving, and differences are not viewed as deficits.” (Harvard University) 

    Research Inclusion: Taking a whole systems approach to what and how we do research; identifying and removing long standing, structural barriers to success across our people, policies, processes and practices. (NIHR Research Inclusion Strategy) 

    Underserved groups in research: The definition of ‘underserved’ is context-specific; it will depend on the population, the condition under study, the question being asked by research teams, and the intervention being tested. Some key characteristics that are common to several underserved 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 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 ‘underserved’ reminds us of this perspective in a way that alternative terms such as ‘underrepresented’ do not. (NIHR Research Inclusion Strategy) 

  • In 2024, one of HDR UK’s Institute Wide Objective was: “Pushing the Boundaries of EDI”. We undertook an EDI landscape review to assess HDR UK’s current position in relation to progressing Equity, Diversity and Inclusion (EDI) – to identify what we are doing well, what we could do better, where we could learn from others and where we could do something unique. The review also explored future opportunities for synergy, integration and partnership. Subsequently, drawing on the landscape review, we then consulted on a draft EDI strategy with HDR UK stakeholders (staff, delivery partners and our public advisory board). Further to consultation, the finalised version of the EDI strategy was provided to HDR UK Board for approval. The strategy will be published and publicly available on HDR UK’s website.