Promoting inclusion in health research is a way for us to try and address health inequalities and support fairer access to healthcare for all. The course covers why it’s important to include under-served groups in health research.
It also shares ideas for how to apply the principles of INCLUDE, an NIHR project led out of Newcastle University, to your research.
What is an under-served group?
There is no single definition for an under-served group. It’s highly context-specific, depending on:
- the population
- the medical condition
- the question being asked by research teams
- the intervention being tested.
But some key characteristics that are common to several under-served groups are:
- lower inclusion in research than expected from population estimates
- high healthcare burden 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.
Some examples of groups who may be under-served, in either specific contexts or more generally, can include:
- people who are socio-economically disadvantaged
- people from Black, Asian and ethnic minority groups
- people at age extremes (under 18 or over 75).
Credit: TwentySeven Design
But this list is by no means exhaustive and many more examples exist.
By not including a broad range of participants in research, or leaving out specific groups, there is a risk that results may not be generalisable to a broad population. Groups may also respond differently to an intervention due to differences in their physiology or medical condition.
Only by studying the effects of an intervention in a range of groups can we be sure that the balance of risk and benefit is favourable.
How is the course aiming to improve healthcare?
The INCLUDE project was commissioned in 2017 by the National Institute for Health Research (NIHR) and hosted from Newcastle University to explore how we can improve the inclusion of under-served groups in health research. Using the basis of our vision, ‘better healthcare through more inclusive research’, our steering group developed the INCLUDE guidance.
The guidance is a tool to support researchers, funders and study teams work towards more inclusive research. It shares examples of good practice and resources to guide teams seeking to engage with, and improve inclusion of, under-served groups in health research.
We used the guidance as the basis of this online course. It is supplemented with:
- practical examples
- case studies
- interactive videos and quizzes
- opportunities for reflection
- access to useful resources.
Who is the course aimed at?
The INCLUDE course is for anyone who has an interest in health research, inclusivity and the research lifecycle. The course is designed to help those who may be involved in the design and delivery of research. It can be applied across the whole of the research lifecycle from prioritising research questions through to dissemination of the results.
It aims to get research teams, assessors, funders and reviewers thinking about ways of making health research more inclusive. To ensure under-served groups are more fairly represented in health research.
How do I access the course and what topics will I cover?
If you use an NIHR, NHS or UK university email address, the course is accessible online through NIHR Learn.
If you do not have an email address with a domain listed above, please visit the NIHR Open Learn platform, which now also hosts the INCLUDE course.
Through the INCLUDE online course, we cover:
- topic 1: Why is it important to include under-served groups in research?
- topic 2: What is an under-served group?
- topic 3: Examples of under-served groups
- topic 4: Examples of barriers to inclusion
- topic 5: INCLUDE in practice: COVID-19 and Patient and Public Involvement and Engagement.
How can I find out more?
For more information about INCLUDE or to share feedback about the course, please email crnspecialtyclustere@nihr.ac.uk.
For a broad overview of the INCLUDE project and what it is setting out to achieve watch this video from Professor Miles Witham.
We would love for you to share the INCLUDE course widely amongst your health research colleagues and networks or join the Twitter conversation with #NIHRinclude.
Access the NIHR INCLUDE Guidance.
Access NIHR INCLUDE COVID-19-specific Guidance.
Top image: Credit: David Tett
Based at Newcastle University, Ella Anderson was responsible for the project coordination of NIHR INCLUDE, led by Professor Lynn Rochester, and the development and delivery of the INCLUDE online course.
Ella has recently changed roles and is now the Public Involvement and Engagement Manager for FUSE, the Centre for Translational Research in Public Health. Ella has a passion for research, public involvement and engagement (PIE), and inclusivity. She continues to look for new and interesting ways to engage meaningfully with public, caregivers and the health research community to support the delivery of world-class research with an aim to improve health and wellbeing, and tackle inequalities.