Making research inclusive: Q&A with Hyunjoo Lee

The National Institute for Health and Care Research (NIHR) is introducing important changes this autumn.

Good research is fair, inclusive and reflective of the country's demographics.

The NIHR is committed to making this happen by making inclusion a condition of funding. This is key to improving health and care for everyone and reducing health and care inequalities.

We spoke to Hyunjoo Lee, a Project Manager at University Hospital Southampton, about what researchers need to know.

Hyunjoo is leading on Equality, Diversity and Inclusion (EDI) initiatives in the Southampton Centre for Research Engagement and Impact (SCREI).

What does it mean for research to be inclusive?

Health and care research should include people from all regions and communities. This helps ensure that findings can be applied to everyone.

However, some groups of people are less well represented in research. We refer to these as ‘under-served’ communities.

Inclusion is an NIHR operating principle. They are making research more inclusive through new funding criteria and performance management. All applicants will be expected to justify how their research has been designed inclusively. This funding condition will take effect from autumn 2024.

Research funding is often awarded to the same small number of places and organisations. That’s why the NIHR is promoting training for people in less research-active areas of the UK. For example, NIHR fellowship schemes provide the opportunity to complete a master's degree.

More information on inclusive research is available here.

How is inclusive research design becoming a condition of funding?

The NIHR wants to encourage all researchers to think about under-served communities when planning and designing their research proposals. This is key to reducing health and care inequalities.

All research programmes will include costed research inclusion plans and researchers will be held to account for delivering on their plans. Applicants will be required to demonstrate how inclusion is being built into all stages of the research lifecycle.

The funding condition will take effect from the end of 2024 for all NIHR domestic programme awards. It will apply to NIHR infrastructure and global health awards from 2025.

New requirements about accounting for sex and gender in health and research will also be brought in next year.

From the end of 2024, guidance will be available to all applicants as part of the NIHR standard applications process. Training opportunities will also be available. Find out more here.

What resources and training are available to help researchers plan for inclusive research?

There are a number of resources available on the NIHR Learn Research Inclusion Hub.

The Research Support Service’s EDI toolkit is another useful resource. It was updated earlier this year to include the NIHR’s new Research Inclusion Requirements. For an example of a framework and good practice, I would also recommend checking out the NIHR-INCLUDE project.

The NIHR held a webinar for researchers on inclusive research design. A recording is available to watch here.

All changes are based on the NIHR Research Inclusion strategy 2022-2027.

What about patient and public involvement (PPI)?

Involving people in our research is about more than asking them to take part in a trial or study. Volunteers also help to shape what we do and how we do it. We call this patient and public involvement (PPI).

PPI is an active partnership between patients, carers and members of the public with researchers that influences and shapes research. Examples of PPI include offering advice as members of a project steering group, supporting the development of research materials and undertaking interviews with research participants.

An important pillar of research inclusion is public involvement partnerships. These must be accessible. They must also include a range of people and groups, as informed by community and research needs.

All research should be informed by a diversity of public experience and insight. This way, it leads to treatments and services that better reflect everyone’s needs.

There are lots of things researchers can think about to become more inclusive in PPI. Some important considerations are outlined in An extended video of a presentation on EDI in PPI is also available here.

What can Southampton researchers do if they have questions about research inclusion?

Nationwide support can be provided as below:

• To discuss important approaches in inclusive research as a funding condition, reach out to the NIHR Research Support Service (RSS) that can help with developing funding applications and at other stages in the research for health and social care researchers.
• If you have any case studies or examples of barriers that you have faced when delivering research in under-served communities, please contact the NIHR Research Inclusion team at researchinclusion@nihr.ac.uk.

The Southampton Centre for Research and Impact (SCREI) is promoting an equitable, diverse and inclusive research culture across our university-hospital partnership.

We can advise you on many aspects of EDI in research. Please contact researchedi@uhs.nhs.uk if you have any questions.