Inclusive Research: Key Concepts and Practical Strategies
- elizabethmmorrow
- Jan 26
- 23 min read
Authors of this Long Read
Dr Elizabeth Morrow, Independent Researcher and Inclusion Specialist, Downpatrick, Northern Ireland, UK
Prof Tushna Vandrevala, Professor of Health Psychology, Faculty of Health, Science, Social Care and Education, Kingston University, UK
Prof Fiona M. Ross CBE, Emeritus Professor, Faculty of Health, Science, Social Care and Education, Kingston University, UK
Please feel free to share any content in this long read or use it in your teaching or research with an acknowledgement as follows:
“Morrow, E., Vandrevala, T, Ross, F. (January 2025) Inclusive Research: Key concepts and practical strategies. Seven Cs of Inclusion Blog. Accessible at: https://elizabethmmorrow.wixsite.com/sevencsofinclusion”
Highlights of this Long Read:
Embedding inclusion within research is vital for addressing persistent and emerging social inequalities and injustices. In the context of health and care research estimates suggest that 60–80% of UK health research studies lack sufficient inclusivity based on demographic categories. Other research fields and disciplines - such as law, climate science, and arts and humanities - are likely to be contributing to social inequalities but the scale is unknown and there is little critical investigation into the inequalities in research.
To effectively address disparities and inequalities, research must prioritise solutions that directly benefit those most in need and those most disadvantaged by current systems - an approach firmly grounded in equity. For instance, fields like Artificial Intelligence (AI) and quantum computing often grapple with challenges in meaningfully adopting inclusive research practices or making substantive progress in addressing health inequalities.
From 2024, the UK National Institute for Health and Care Research (NIHR) requires all funding applications to include detailed strategies for research inclusion (RI). However, advancing the inclusion agenda requires more than improving the representation of data subjects in research. While this represents a significant step forward, there is a risk that the inclusion agenda could devolve into tokenistic exercises with limited impact on systemic barriers and intersectional inequalities.
Drawing on the authors’ respective knowledge and experience of the sector, this long read highlights four key inclusive research domains: 1) inclusive funding and study design, 2) inclusive public and community engagement, 3) inclusive research methodologies, and 4) inclusive research environments and cultures.
The presence of intersectional, ethical, and Equality, Diversity and Inclusion (EDI) principles across these domains is complex and not always harmonious. Understanding how inclusion is perceived and operationalised in these different domains can provide valuable insights and practices to enhance systemic equity. Researchers and research organisations can become more inclusive and equitable.
Achieving long-term, meaningful progress on research inclusion requires patience, care and an ongoing commitment to curiosity across this evolving research landscape.
Key words: Research inclusion; Inclusive research; Research culture; Equality, diversity and inclusion; Health inequalities; Under-served groups; Research policy
Introduction
International Context of Inclusive Research
In the international context, research inclusion is shaped by varying priorities, values, and understandings of equity, diversity, and inclusion (EDI) across countries. These differences can present significant challenges, as cultural, political, and historical factors influence how EDI is conceptualised and implemented. For instance, while some countries prioritise gender equity or indigenous representation in research, others may focus on addressing class disparities, caste systems, or colonial legacies. These differing priorities often reflect local realities but can create misalignment in international research collaborations, where competing or contradictory goals may arise.
Moreover, countries differ in their capacity and willingness to invest in EDI initiatives. High-income nations may have established frameworks for addressing research inclusion, but these can sometimes impose Western-centric ideals that do not align with the cultural values or practical needs of low- and middle-income countries. This dynamic risks reinforcing power imbalances, where underrepresented regions are expected to conform to external standards rather than co-developing context-specific approaches. Furthermore, some governments may deprioritise EDI entirely, either due to political resistance to social change or a lack of resources, creating further disparities in global research inclusion efforts. A critical approach to fostering EDI internationally must therefore acknowledge and address these tensions, prioritising dialogue, mutual respect, and equitable decision-making across diverse contexts.
Recent Changes in UK Health Research Funding
Since 2024, the UK National Institute for Health and Care Research (NIHR) has made Research Inclusion (RI) central to its funding requirements, mandating that all research proposals outline clear strategies for inclusive practices [1]. It is an ambitious policy that stands to have far reaching impact on research priorities and focus. This directive arises from NIHR’s recognition that health and care research often fails to reflect the diversity of the populations it aims to serve, particularly those with the greatest needs [2]. Estimates suggest that 60–80 per cent of UK health research studies lack adequate inclusivity across various diversity characteristics [3-4].
By prioritising inclusion, the NIHR seeks to ensure that research is not only equitable but also effective in addressing the needs of underserved, underrepresented, and marginalised groups (see NIHR guidance on definitions and inclusive language [5]). The NIHR mandate has the potential to drive significant improvements in health inequalities and outcomes for historically excluded or often-overlooked groups. It offers vital impetus for researchers to embed inclusion at every stage of the research lifecycle, from design to dissemination. However, as we argue here, it is important that the inclusion agenda does not devolve into tokenistic representation exercises with limited impact on systemic barriers and intersectional inequalities.
The NIHR Research Inclusion (RI) requirement, while laudable in its aim to address inequalities and promote the inclusion of people and communities that are less well represented as data subjects in research [5], raises pressing ethical considerations about how inclusion is conceptualised and operationalised throughout research systems. Mandating RI in NIHR funding applications is a bold and ambitious policy that heightens the urgency to address how inclusion is perceived and put into practice.
A Note on Language
It is crucial to recognise from the outset that discussions about inclusion can evoke strong emotions, as they often touch on deeply personal experiences or perspectives related to exclusion. Individuals or groups may feel excluded—frequently overlooked, seldom heard, or dismissed—for various valid reasons rooted in both historical and present contexts. The language used in these conversations can also be distressing, amplifying emotional responses and underscoring the complexities and sensitivities inherent in addressing inclusion. Respect for individuals’ preferences regarding how they are identified or described is essential [5].
This long read deliberately avoids offering a prescriptive list of categories or characteristics for inclusion in research. Effective inclusion is inherently context-specific and transcends demographic labels, requiring an understanding of the unique dynamics and needs of each research setting. Terms such as "inclusion in research," "research inclusion," and "inclusive research" represent a complex, interconnected concept that varies by context.
For this long read, we define "research inclusion" tentatively as the intentional involvement of diverse groups, perspectives, and experiences throughout the research process. This approach emphasises who is engaged, how these groups participate and influence the research, and how they benefit from its outcomes [6]. Inclusive research seeks to address health and care disparities, social inequalities, and inequities within research systems. It involves applying an equity lens to all aspects of research (projects, fellowships, institutions, collaborations, networks, and policies, and so on) to identify and address systemic barriers and intersectional inequalities. However these are emerging ideas and practices that are not well understood or researched.
The Importance of Intersectionality
The concept of intersectionality—a framework recognising that individuals experience discrimination and disadvantage uniquely due to the overlap of multiple social identities—is a well-established core concept for research inclusion [7]. Research on social determinants of health shows that the causes of health inequalities extend beyond individual characteristics, such as sex and gender. Behavioural and cultural dimensions of inequality are often overlooked, as are broader factors including, geographical or place-based disparities, digital exclusion, and the impact of climate-related inequalities [8]. A narrow view of research inclusion risks perpetuating systemic inequities by failing to see and address the bigger picture of economic, social, cultural, and environmental factors that lead to health inequalities.
Although we are focusing on UK health and care research here, inclusion is a concern across all areas of research and in other countries. Systemic inequities, intersectional disparities, and underrepresentation of marginalised groups often permeate the broader global research landscape, requiring coordinated efforts and context-specific strategies to address these challenges comprehensively. It involves asking who is involved in research on multiple levels. To elaborate, in the UK Research Excellence Framework (REF) 2029, the thinking on inclusion is being shaped by a view that integrates Equality, Diversity and Inclusion (EDI) perspectives across the research environment, with a focus on creating an equitable and supportive culture for researchers, participants, and communities.
The inclusion agenda could be thought of as a response to addressing multiple systemic inequalities that may actually be contributing to health inequalities. They include challenges such as equitable research design [11], underrepresentation in datasets and sources [10], addressing digital exclusion and algorithmic biases [11], inclusive opportunities for engagement in research [6], and the need to cultivate inclusive research cultures that value diversity in the workforce [9]. Such challenges are generally perceived and approached in isolation due to the fact that they involve different professional groups and disciplinary knowledge, yet there is value to looking and learning across systems.
Highlighting Four Inclusive Research Domains
The aim of this long read is to highlight four inclusive research domains and the possibility for learning and sharing insights between them:
· Inclusive research funding and design
· Inclusive public and community engagement
· Inclusive research practices
· Inclusive research environments and cultures
The sequence in which we address these domains is neither hierarchical nor indicative of their relative importance; rather, they represent interconnected elements that collectively contribute to fostering inclusivity in research but as far as we know have not been previously documented in such a way. Each section provides an overview of the key concepts and thinking about research inclusion in each domain.
Figure 1. Inclusive Research Dimensions
Inclusive Research Funding and Design
Key concepts and strategies:
Socially Relevant Research: Research funders, such as the NIHR, play a pivotal role in advancing research inclusion. However, by NIHR’s own admission, funding is often concentrated within a small number of organisations and locations [2]. This pattern perpetuates disparities and leaves research expertise underdeveloped in areas where it is most urgently needed. For example, research into long-term conditions such as mental ill-health and diabetes highlights disproportionately low recruitment in regions with higher prevalence [11]. Evidence suggests that prioritising socially relevant research addressing the needs of underrepresented populations can help mitigate these gaps. Certain populations and groups are more likely to be at risk too – for example those with common mental health problems are more likely also be experiencing living in poverty or displaced communities. Risk and inequalities are often interwoven.
Equity in Research Priorities: Inclusive research design benefits from embedding equity into funding programmes and calls. The literature indicates the importance of going beyond visible and non-visible protected characteristics, for example to consider intersectional factors such as socioeconomic, behavioural, cultural, place-based, disease rarity, digital, commercial and environmental dimensions of inequality [6]. As the World Health Organization highlights, without taking into consideration these broader determinants, health and care research is perpetuating existing inequities.
Inclusive Research Assessment and Reviewing: Best practices in research governance suggest that equity can be strengthened by embedding inclusive approaches into assessment and reviewing processes. This includes ensuring diverse representation across ethical review boards, management structures, advisory panels, and decision-making committees. Evidence highlights that funders and governance bodies, such as REF 2029 panels, can promote inclusive public and community engagement (P/CE) by integrating these principles into ethical oversight and funding evaluations [9]. For example, ethical review boards can consider inclusion strategies proposed by researchers, identifying potential risks and unintended consequences while supporting ongoing monitoring to maintain meaningful and equitable practices.
Diverse Grant Holders: The literature indicates that expanding the diversity of grant holders is an effective way to foster inclusive research ecosystems. Policies, guidance, training, and capacity-building initiatives have been identified as valuable tools for helping researchers navigate the complexities of inclusion. These efforts are most impactful when they aim to support purposive and respectful practices, avoiding extractive or tokenistic approaches, and ensuring equitable benefit distribution.
Inclusive Reporting: Research evaluation practices informed by an equity lens are increasingly recognised as critical for assessing processes and outcomes. Beyond considerations of scientific rigour and impact, inclusive evaluations emphasise contributions to reducing inequalities and promoting social justice. Involving diverse stakeholders, particularly marginalised groups, in defining evaluation criteria and outcomes is considered a best practice. Metrics that account for intersectional and contextual factors are essential to ensuring fair benefit distribution. The literature also underscores the importance of addressing unintended consequences, such as reinforcing disparities, and implementing feedback loops to refine practices over time [11].
Inclusive Public and Community Engagement
Key concepts and strategies:
Inclusion of Diverse Communities: Public and Community Engagement (P/CE) is a broad concept that encompasses Patient and Public Involvement and Engagement (PPIE) throughout the research process. At its core, P/CE ensures that the voices, experiences, and needs of diverse and often marginalised communities are meaningfully integrated at every stage of research. This engagement is vital for ensuring that research reflects the real-world issues affecting these populations, particularly those who are under-served or underrepresented in research. Effective P/CE requires the establishment of trust through two-way communication, respecting cultural and contextual differences, and addressing any power imbalances that may impede genuine involvement.
Diverse Voices and Lived Experiences: Central to inclusive public and community engagement is the inclusion of diverse voices and lived experiences, ensuring that research reflects the full spectrum of society. This includes diverse representation across different ages, genders, ethnicities, and socioeconomic backgrounds. However, mere representation is not enough. It is crucial that communities also have a meaningful role in shaping research priorities and decisions, which may differ from those typically established by professionals. By involving communities directly in determining what is studied and how, researchers can align their work more closely with the needs and concerns of the populations they seek to serve, fostering trust and creating a more relevant research agenda.
Diverse Contributions: Inclusive P/CE goes beyond participation to actively involve communities in the co-creation and implementation of research. This means incorporating a variety of contributions from diverse stakeholders, including lived experiences, local knowledge, and community expertise. These perspectives enrich research, helping to ensure that it is responsive to the needs of marginalised groups. The literature suggests that collaboration with voluntary and community organisations (VCSOs) can significantly enhance the inclusivity of research agendas and methodologies, provided that such partnerships are well-planned, sustainable, and not exploitative or extractive for short-term gain [17]. This approach positions communities as co-creators, not just participants, of research.
Inclusion of Often-Overlooked Groups: Effective P/CE recognises that inclusion must extend to groups that are often overlooked or digitally excluded. For example, digitally excluded groups face additional barriers to participating in research due to lack of access to technology or digital literacy. Ensuring accessibility is a key element of inclusive engagement, as it enables broader participation, including those from rural areas, low-income backgrounds, and other underserved communities. Tailored strategies, such as in-person workshops or community advisory boards, are crucial for overcoming these barriers and ensuring that all groups have a meaningful voice in the research process.
Digitally Excluded Groups: To ensure that digitally excluded groups are not left behind, researchers and funders are increasingly recognising the importance of providing alternative modes of engagement. This could include community-based engagement activities that offer in-person interactions or paper-based materials for those without access to digital platforms. As part of inclusive engagement, it is essential to ensure that research processes are accessible to those who may be excluded from online spaces due to technological or socioeconomic barriers.
Co-production: One of the fundamental shifts enabled by P/CE is the transition from research on people to research with people. This approach embeds equity, respect, and relevance at the heart of the research process. It recognises that inclusion extends beyond mere representation in data samples to include access to resources such as funding, tools, and platforms. By ensuring that both researchers and participants have fair opportunities to engage, P/CE helps to level the playing field and create more equitable research environments.
Impact of involvement: P/CE emphasises the importance of the process of knowledge generation itself, recognising that diverse forms of knowledge—such as lived experiences and community expertise—enrich research outcomes. Citizen Science and similar initiatives allow for the integration of perspectives often excluded from traditional academic approaches. The literature supports the idea that research processes can have far-reaching social impacts, addressing injustices, targeting disparities, and promoting tangible benefits such as the development of research skills and capacity within marginalised communities.
Inclusive Communication: An essential aspect of P/CE is the commitment to accessible communication. Research findings must be shared in ways that resonate with and are usable by all audiences (open access), including non-academic stakeholders. This ensures that research outcomes can have a broader impact and that the knowledge generated is available to those who need it most.
A potential tension arises between the Research Inclusion (RI) agenda and PPIE, as these concepts often overlap but serve distinct purposes. Research Inclusion focuses on broadening participation to ensure diverse groups benefit from research outputs, while PPIE focuses on engaging patients, carers, and the public in shaping research. While both agendas share a commitment to equity, they often operate under different ethical frameworks, and their objectives may sometimes be conflated. This confusion can lead to tokenistic practices, reducing PPIE to a mere box-ticking exercise or, in some cases, causing unintended harm or offence by overly simplifying diversity to individuals’ characteristics.
Inclusive Research Practices
Key concepts and strategies:
The literature on inclusive research practices highlights the importance of integrating such practices throughout the entire research lifecycle to ensure equity, relevance, and impact. Key strategies, summarised below, often focus on the relational aspects of research processes (accessibility, recruitment, communication etc.). However, from an equity perspective, inclusive research must be designed with a clear understanding of who underrepresented and under-served groups are within the specific research context.
Inclusive Research Design: Researchers can prioritise the societal impact of research by fostering collaborations with policymakers, communities, and external partners to design research to have socially relevant outcomes and reduce inequities [18]. Identifying under-served groups is often a complex and subjective task, particularly when inequalities are hard to pinpoint, data is insufficient, or groups are underrepresented. These challenges are further exacerbated when funders have not conducted equity assessments to guide the focus of a call. Researchers and reviewers may also lack the necessary tools and techniques to accurately identify and prioritise those most in need. Moreover, target groups themselves may hold differing perspectives, questioning whether they are truly “in need” or highlighting other priorities they consider more pressing.
Inclusive Recruitment and Methods: Researchers can ensure inclusivity in participation by adequately costing for inclusion, providing non-digital options, simplifying consent processes, and adopting inclusive recruitment strategies, but this still might not be enough to overcome systemic barriers or marginalisation [1,15].
NHS England has published Increasing diversity in research participation: a good practice guide for engaging with underrepresented groups, which provides practical insights for researchers on how to engage more diverse participants in health research [21].
Inclusive Data: Another important challenge is the interplay between inclusion in health and care research and inclusion in health data and digital domains. Researchers often focus on representation and inclusive recruitment to studies [10], while technologists and data managers prioritise end-user accessibility and usability of technology and data systems. This separation can create silos, with researchers overlooking digital barriers, data skews or algorithmic bias [11], and technologists failing to consider how their systems align with the RI agenda. This disconnect risks perpetuating inequities, especially as health and care research increasingly relies on digital tools for recruitment, data collection, and analysis; as P/CE (including PPIE) increasingly uses digital engagement [12]; and healthcare systems move from analogue to digital modalities [13].
Inclusive Analysis: Analysis can amplify the voices and inequalities experienced by underrepresented groups by reflecting their diversity in final reports and ensuring their perspectives are included [1]. NIHR recommend that researchers analyse disaggregated data to address equality issues, considering intersectional inequalities across characteristics like age, gender, disability, poverty, and education [1]. This is especially critical in AI applications, where data scarcity or mistrust may hinder equitable analysis. Opportunities in using non-traditional data sources must be balanced against challenges like inconsistent categories and difficulties in linking datasets.
Inclusive Dissemination: Use of open-access platforms and diverse communication formats can make findings accessible to varied audiences but not to everyone. Similarly, inclusive knowledge mobilisation relies on accessible communication, ensuring that research findings are shared in ways that resonate with and are usable by diverse audiences [1].
Inclusive Implementation: Implementation of research findings and outputs is a vital equity consideration, as a growing body of literature highlights that the deployment of interventions and knowledge mobilisation can inadvertently exacerbate health inequalities [19]. Without careful planning and equity-focused strategies, well-intentioned initiatives may fail to reach under-served populations or disproportionately benefit already advantaged groups. Effective implementation requires addressing barriers to access, engaging with marginalised communities, and ensuring that interventions are tailored to diverse needs. By integrating these considerations into the implementation process, we can reduce the risk of deepening disparities and promote more equitable outcomes.
Inclusive Research Environments and Cultures
Key concepts and strategies:
REF 2029’s "People, Culture and Environment" (PCE) element emphasises inclusivity in leadership, policies, and practices, encouraging institutions to develop strategies that foster diversity, well-being, and equal opportunities within research [6]. Inclusivity is defined in the preliminary PCE guidelines as “Ensuring the research environment is accessible, inclusive, and collegial. Enabling equity for under-represented and minoritised groups.” [20]. However, this framing of inclusion may conflict or exist in tension with other dimensions of inclusion, particularly those focused on data subject representation or methodological inclusivity (e.g., more effective recruitment and retention in clinical research trials).
As REF 2029 approaches the criteria for PCE will play a pivotal role in motivating inclusion initiatives. However a focus on inclusive cultures and environments may detract attention from raising awareness about systematic barriers and issues of intersectionality [16]. While REF 2029 promotes inclusive environments and cultures, it may not fully address the nuanced, practical challenges of inclusivity in research design, data collection, or addressing specific inclusion challenges in emerging fields like AI and quantum computing (acknowledging the fields of human-centred AI and UX-design). This could create a dichotomy between institutional inclusivity and the more granular, field-specific approaches needed to address systemic barriers and particular intersectional inequities in different fields of research assessed by different REF panels.
Table 1. Inclusive Research Domains
Domain | Purpose/Aim | Approaches | Goals/Outcomes |
|
|
|
|
Inclusive Research Funding and Design | · Promote equity in research funding and design by addressing inequalities upstream, informed by intersectionality and assessment of needs | · Incorporating nuanced understandings of social and health inequalities; targeting protected characteristics and behaviours | · Research outcomes that reduce systemic inequalities and are more equitable |
Inclusive Public and Community Engagement (including PPIE) | · Embed inclusion in research design through public and patient involvement and engagement (PPIE) | · Amplifying marginalised voices, involving diverse stakeholders at all stages of research | · Research that reflects and addresses the needs of marginalised communities |
| · Tackling digital exclusion by safeguarding rights to non-digital alternatives in research and health and care systems | · Providing non-digital options, ensuring access for digitally excluded populations | · Enhanced accessibility and equity in participation |
Inclusive Research Practices | · Inclusive data: Address issues of data poverty, skews, and underrepresentation in data sources | · Identifying gaps in data availability, collaborating with underrepresented groups, and expanding data collection efforts | · Richer and more inclusive datasets |
| · Include underrepresented and underserved groups through targeted engagement | · Conducting consultations, collaborations, and tailored outreach programmes | · Stronger collaboration with marginalised communities, ensuring their needs are addressed |
| · Inclusive analysis: Safeguard against algorithmic bias and injustice in digital solutions to health and care challenges | · Reviewing algorithms for fairness, ensuring diverse datasets, engaging interdisciplinary expertise, creating feedback loops and responsiveness | · Reduced bias in research and enhanced trust in digital technologies and systems |
| · Address underrepresentation in research as data subjects | · Outreach programmes, cultural competency training for researchers, and equitable recruitment strategies | · Increased representation of underrepresented populations |
| · Engaged research approaches: Develop socially/locally-informed and ethical inclusive research methodologies | · Co-designing studies with community input, put in place ethical anchors for engagement, flexible and sensitive approaches | · Ethical, inclusive, and impactful research practices |
| · Inclusive implementation: Ensure equitable application of research findings and interventions in practice | · Context-specific adaptations, collaboration with stakeholders, and continuous feedback loops | · Practical interventions that address community-specific needs and improve outcomes for all |
| · Inclusive dissemination: Use accessible, open access, and multi-format communication methods incorporating inclusion reporting | · Adopting participative dissemination strategies, creating diverse communication materials and generating insights into research inclusion | · Wider reach and stronger engagement across diverse audiences and shared insights into research inclusion |
| · Inclusive research evaluation: To ensure that research outcomes and processes are assessed equitably and reflect the needs of diverse populations. | · Stakeholder input, equity metrics, and inclusive feedback loops. | · Improved accountability, actionable insights, and enhanced trust among marginalised communities. |
Inclusive Research Environments and Cultures | · Foster inclusive recruitment, retention, and career progression in research | · Mentorship programmes, equity-driven hiring practices, and supportive workplace cultures | · Diverse and equitable research teams, driving innovation and inclusion |
Practical steps for embedding research inclusion
Balancing EDI, Ethical and Intersectional Perspectives of Inclusion
The different emphasis of inclusion in different domains underscores the importance of learning across domains and the continuous adaptation of research policies and practices to improve how inclusion is perceived and operationalised. To address disciplinary divides, greater curiosity about inclusion across domains is needed. For example, researchers could collaborate with technologists to ensure digital tools are accessible and relevant to diverse populations, while data managers can engage with research discourse to align their practices with inclusion policies. Cross-disciplinary training, together with best-practice guidance, and collaborative frameworks can help bridge these gaps, fostering a unified approach that ensures advances in research, data and technology benefit all members of society equitably.
Ethical considerations are fundamental to inclusivity, emphasising respect for individuals’ rights, dignity, and cultural contexts. Simultaneously, intersectional thinking ensures that the complexity of overlapping inequalities is fully recognised and placed at the forefront of efforts to achieve research equity. Balancing these ethical, EDI and intersectional dimensions of inclusion can be difficult to comprehend and implement, particularly within a pressurised academic environment that often prioritises the demonstration of inclusion over critical reflection and deeper engagement with its meaning.
There is no guarantee that representation in research alone will reduce disparities. However, there is strong reason to believe that including diverse perspectives in research can develop a more critical and constructive equity lens to identify structural barriers and intersectional inequalities.
Inclusive Research Methods and Approaches
Choices about research methods significantly influence communities and the broader health and inclusion landscape. It is crucial to evaluate how these methods impact different communities, especially marginalised groups, to ensure that research practices do not unintentionally perpetuate inequities. Developing co-production methods that prioritise equity and intersectionality is key to addressing these concerns. By integrating these considerations into research processes, we can create more inclusive and representative outcomes that reflect diverse perspectives.
Embedding intersectionality, cultural competency, power dynamics, and equity into research practices is essential for fostering meaningful participation and use of research findings – these issues need to be taken into consideration in pre-design stages of research studies and programmes. Recognising the knowledge and lived experiences of underserved groups is a vital part of this process. Efforts should be directed at making access to knowledge more equitable by valuing community expertise alongside academic insights. Identifying and utilising best-practice tools and frameworks can guide these efforts, ensuring that they are actionable, sustainable, and effective in achieving transformative change.
Sharing Power to Define Inclusion
One of the most intriguing and underexplored aspects of research inclusion is the power dynamics that shape inclusion efforts, particularly how they determine whose voices are amplified or marginalised in the research process. While inclusion initiatives often focus on who is involved—be it participants, contributors, stakeholders, researchers, and so on—they rarely scrutinise who sets the agenda, allocates resources, or defines what inclusion means in practice. A narrow interpretation of inclusion, such as focusing on a single protected characteristic (e.g., sex or gender) can obscure broader and more complex issues, including cultural or geographical inequalities, rarity of diseases or conditions, and the nuances of intersectional identities.
Lived experiences of exclusion challenge dominant technocratic or even democratic notions of inclusion by exposing the inadequacies of approaches that prioritise uniform non-political solutions over nuanced understanding of different views. For instance, preferences for independence, autonomy or anonymity may reflect cultural or individual values that diverge significantly from mainstream assumptions within traditional inclusion frameworks. As well as acknowledging that researchers may feel excluded from research for different reasons. This issue highlights the importance of moving beyond tokenistic representation to genuinely engage with diverse perspectives, particularly people and communities who experience marginalisation for many different reasons and in different ways.
Creating Spaces and Opportunities to Engage with the Issues
Developing inclusive research requires patience and a willingness to engage with complexity. It requires safe spaces for dialogue and reflection on how we individually experience and collectively approach inclusion. The approach to research inclusion that we advocate highlights that it is not merely a technical, ethical or democratic obligation for researchers but a societal necessity. This perspective prioritises recognising individuals as citizens with agency and valuable insights into inclusion, rather than reducing them to data subjects or demographics [6]. Active public engagement and the willingness of a diverse workforce to be curious and responsive to alternative views about inclusion, as well as open to feedback and adaption.
Research practice is shaped by a range of factors, including normative expectations, disciplinary frameworks, and the specific inclusion policies and metrics relevant to the contexts in which we live or work. These perspectives are further influenced by our personal experiences of exclusion, which may differ across individuals and life stages. Thus our individual understanding of inclusion is shaped not only by the professional or institutional settings we navigate, but also by the social, cultural, and historical factors that inform how we perceive and experience exclusion in our lives. This complex interplay emphasises that inclusion is not an agreed or universal concept, but instead is influenced by context and lived experience.
Incentives for Inclusion
PPIE shows us that engaging marginalised groups in co-creating research systems fosters trust and ensures their needs are prioritised but it also takes time and relational skills. By looking at incentives and motivational factors for inclusion it may be possible to attain more equitable goals and outcomes. Providing underserved communities with education, resources, and equitable access to digital technology, platforms and information is a research inclusion issue. Taking time to build digital literacy and addressing the digital divide through alternative non-digital means also takes resources to ensure everyone benefits from inclusion.
Finding Shared Values and Common Ground
Looking across the various domains identified, three underpinning values emerge that could serve as common ground for learning and sharing insights across domains. These values emphasise that inclusive research should strive to be:
Relevant: Ensuring that research, its influence, and outcomes are applicable and accessible to the full spectrum of society, particularly to those most affected by health inequalities or underrepresented in research.
Equitable: Designing research systems, practices, and outcomes that actively reduce disparities and improve outcomes for under-served groups, while avoiding the risk of inadvertently exacerbating existing inequalities.
Trustworthy: Building confidence among marginalised communities by reflecting their lived experiences in both the process and outcomes of research, thereby fostering greater engagement and benefit.
These shared values provide a foundation for fostering open, respectful, and productive conversations about inclusion that acknowledge complexity while seeking common purpose.
Conclusion
Embedding inclusion in health and care research is a transformative opportunity to address systemic barriers and intersectional inequalities for a more relevant, equitable and trusted research system. Sharing understanding across key domains is critical to advancing inclusive research: 1) inclusive funding and study design, 2) inclusive public and community engagement, 3) inclusive research methodologies, and 4) inclusive research environments and cultures. Learning and understanding how inclusion is perceived and operationalised within each domain, can inform and strengthen efforts across the broader research system. Grounded in EDI and ethical principles that respect people’s rights, dignity, and cultural contexts, and guided by intersectional thinking that addresses the complexity of overlapping inequalities, inclusive research has the potential to drive meaningful and equitable change. However, achieving this requires patience, care, and an unwavering commitment to curiosity and learning within the evolving landscape of research.
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Abbreviations
RI Research Inclusion
PPIE Patient and Public Involvement and Engagement
NIHR National Institute for Health and Care Research
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