Inclusive research is about creating a more equitable, diverse and inclusive environment within the culture of research organisations (including workforce and funder), as well as considering the inclusion of a wider range of populations (including those who are often underrepresented) within our research. Think of Inclusive Research as creating an environment where everyone feels welcome and valued, where biases and barriers to being involved are considered and overcome.
Through a more inclusive culture and awareness amongst researchers and a more inclusive approach to involving and recruiting participants in research, then the research itself can become an important key to improving health and care for everyone and to reduce health and care inequalities.
It is important to ensure that characteristics of the research participants reflect those of the target populations (either topic or demographic specific) if we want to address real need. If research participants do not reflect those of our populations, then:
- Research findings may not translate to real-world populations or settings.
- New treatments, services and initiatives may not be deliverable or applicable to all groups.
- Important findings specific to different populations may be overlooked.
- Health inequalities may be maintained or increased.
In autumn 2024, NIHR moved to making Research Inclusion a requirement in all its domestic funding applications. If you want to know more about this then a recorded webinar can be accessed here, or you can contact the Research Support Service (RSS), who have also updated their EDI toolkit to reflect these changes.
Things to consider in your application:
- Do you have the skills within your team to ensure you can carry out your proposal, to recruit from a particular underserved group?
- Ensure you know the inequalities relevant to your field, showing an awareness of the health or care inequalities driving your research.
- Include areas underserved by research in your study, justify your choice of site.
- Justify your research sample, exclusion/inclusion criteria and consider if any accessibility support would make your research more inclusive eg. translators or technology.
- Specify which demographic data you will collect and how you plan to use it. EDIS@DAISY guidance may help you to think about what and how you frame collecting the information.
- Budget for inclusion, it is recognised that good inclusive research takes longer and costs more. Funders are aware of this. Be realistic.
- Consider alternative methods of engagement and participation to avoid exclusion; arts-based methods, use of community researchers, time and venues of meetings etc.
- Demonstrate how your research is shaped by diverse and inclusive patient and public involvement and engagement (PPIE).
- Plan inclusive and impactful approaches to knowledge mobilisation, bringing stakeholders together throughout the whole research cycle.
Resources:
- NIHR Making Research Inclusive.
- What does equality, diversity and Inclusion mean? (University of Edinburgh).
- How do I champion equality, diversity and inclusion in public engagement? (Imperial College London).
- Tools & roadmap developed by INCLUDE to improve inclusion in research including, handy framework of questions to guide researchers as you design your research.
- Being inclusive in public involvement in health and care research NIHR 2021.
- Increasing Diversity in Research Participation: A good practice guide for engaging with underrepresented groups (NHS).
- Research with marginalised groups: some difficult questions; genders, bodies and politics - writing by Alison Phipps.
- For Equity - a website with tools and resources designed to help researchers integrate an intersectional equity lens into their studies, including the health inequalities assessment toolkit (HIAT).
- Improving inclusion of under-served groups in clinical research: Guidance from INCLUDE project(NIHR).
Some practical things to consider in your research to improve inclusivity:
- You have ethical and funding obligation to mirror the demographics of the area your research focuses on.
- Marginalised communities live and work in the geographical areas of your research and have a democratic right to have a say in how publicly funded health and social care services meet their needs.
- Marginalised communities are not homogenous, for example; Black and Minority Ethnic communities are often banded together under one term (BAME), when really there are a huge number of distinct communities and cultures. Do not underestimate the Power of Language when it comes to describing different groups of people with their own identities.
- A combination of overlapping factors can contribute to the degree in which a person is marginalised (e.g. ethnicity, socio-economic status, gender, age). It is important to consider and understand this intersectionality and the possible effects on people’s lives.
- Adjustments may need to be made to allow fair and equal access to opportunities (please see earlier section on accessibility and communication).
- Formal terminology for describing communities does not necessarily mirror how someone sees their own identity and there are current debates about these terms. If you are not sure how to describe someone, ask them.
- You may find some people are distrustful or uninterested in research. This is often because health inequalities have not been addressed for many years or for other historical reasons. Find out what these reasons are.
- What is the wider picture for your research? For example, what is the history of health services in your area? Why do health disparities exist in your area?
- Marginalised groups are often referred to as 'hard to reach' but if people are not engaging, why is that? It may be because the appropriate methods are not being used to reach them. A less negative term to be used is 'diverse or underserved communities'.
- Take time to build trusting relationships with public members and communities you want to engage with and involve in your research.
- You need to be aware of and consider what you, as an individual, bring to the table (your prejudices and views) and how this, in turn, can affect how you work with people, the opinions you do or do not take on board and the consequences and outcomes of this. This will enable understanding and appreciation of the role that privilege and bias plays in our lives. This is 'cultural competence'.
