"If your research isn't needed, don't do it. If you're unsure of your motivations (or if they are self-serving), don't do it. […] If you can use existing sources of data, use them. If you do end up working with marginalised people, look after them. Afterwards, give up your platform whenever you can."
Alison Phipps, Principles of research with marginalised groups
What does equality, diversity and inclusion mean?
EDI ensures fair treatment and opportunity for all. It aims to eradicate prejudice and discrimination on the basis of an individual or group of individuals' protected characteristics.
What is equality?
At its core, equality means fairness: we must ensure that individuals, or groups of individuals, are not treated less favourably because of their protected characteristics.
We must also ensure that those who may be disadvantaged can get the tools they need to access the same, fair opportunities as their peers. Equity recognises that different people will require different kinds of support in order to access the same opportunities.
What is diversity?
It is important to recognise, respect, and celebrate each other’s differences. A diverse environment is one with a wide range of backgrounds and mindsets, which allows for an empowered culture of creativity and innovation.
What is inclusion?
Inclusion means creating an environment where everyone feels welcome and valued. An inclusive environment can only be created once we are more aware of our unconscious biases, and have learned how to manage them.
What does equality, diversity and inclusion mean? - University of Edinburgh
How do I champion equality, diversity and inclusion in public engagement? - Imperial College London
One of the aims of ARCs is to ensure that marginalised groups are involved in research, as historically they have been under-represented in health and social care research.
The first, and arguably the most important UK Standard for Public Involvement is about Inclusive Opportunities – ensuring that we offer public involvement opportunities that are accessible and that reach people and groups according to research need. Research needs to be informed by a diversity of public experience and insight, so that it leads to treatments and services which reflect these needs.
Things to consider:
- You have an ethical and funding obligation to mirror the demographics of the area your research focusses 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. As an 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.
- 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.
- 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.
Subjectivity: the way research is influenced by the perspectives, values, social experiences, and viewpoint of the researcher, (from SAGE Research Methods)
Reflexivity: the examination of one's own beliefs, judgments and practices during the research process and how these may have influenced the research. Reflexivity involves questioning one's own taken for granted assumptions. (Warwick University)
Links to Resources:
Tools & roadmap developed by INCLUDE to improve inclusion in research including handy framework of questions to guide researchers as you design your research:
Detailed guidance from the Joseph Rowntree Foundation on working with Black and ethnic minority communities in research:
Research with marginalised groups: some difficult questions – genders, bodies, politics – writing by Alison Phipps
Report on health inequalities with the LGBTQ+ community. Raising the Equality Flag Report May 2019, International Longevity Centre