Equity, equality, diversity and inclusion (EEDI) in MS research
We believe diversity is the key to research excellence. And we’re committed to building an inclusive research culture.
This hub gives researchers practical tools, resources and examples of best practice. We want to to help make your research more inclusive and relevant for everyone with MS.
If you’re a researcher interested in improving the inclusivity and diversity of your research email [email protected] to find out more.
Why EEDI in research matters
MS is different for everyone. People are diagnosed at different ages, experience different symptoms, respond differently to treatments, and face different challenges.
These differences are shaped by a mixture of biology and our life circumstances. For example:
- Genetics
- Race and ethnicity
- Sex and gender
- Age
- Income
- Level of disability
- Major life events like pregnancy
- The support of family, friends and healthcare professionals
If research doesn’t consider this diversity or include representation from across the whole MS community, we may miss the important biological and social differences that exist between people. This means research findings may not be relevant to everyone, and we risk developing treatments, support and care that work for some people, but not for others.
Your EEDI Hub
Inequalities and bias still shape who gets to have a career in research and who’s able to take part in research. These issues have existed for a long time, and for some groups, they’ve damaged trust in the research process.
We’re working to rebuild that trust and to fund research where everyone feels welcome, valued, and safe. We also want to remove practical barriers and provide help so that everyone who wants to have a career in research or take part in research can do so.
We know these deep-rooted issues won’t be solved overnight. It’ll take commitment, time and collaboration to create lasting change. In 2021, we launched our first EEDI action plan for MS research. Since then, we’ve listened to what people told us and learned from what worked and what didn’t. We’ve used these learnings to shape our new action plan, which will guide our efforts through to 2029.
Read our EEDI in research action plan 2025-2029 (PDF 610.15 KB)
Progress we’ve made against our action plan
Since 2021, we’ve made steps to change how we fund our research. We’re pleased with the progress we’ve made so far but we know there is much more to do.
Read where we've got to in our 2021 – 2024 progress report (PDF 516.4 KB)
Older reports
Not everyone has an equal chance to have a career in science. People from marginalised backgrounds often face additional challenges as they try to build their careers. From school all the way to becoming senior academic leaders.
These challenges don’t just lead to inequality in our research workforce. They also shape the direction of MS research itself. When voices are missing from the conversation, important views and ideas can be missed too.
As a funder, we can influence who gets to start and grow a career in research. We also influence whose voices are heard in the decisions that shape the future of MS research.
By addressing diversity in the research workforce, we want to create an environment where talented people from all backgrounds can contribute their unique experiences and skills to help people affected by MS.
Diversity data across our research award funding
We need evidence to understand how diverse our MS workforce is. In 2022, we began collecting data to understand who we fund. Who makes decisions about what research we fund. And, most importantly, who may be missing.
How can you help?
You can help us continue to build our evidence by completing our EEDI survey hosted on our grants management system, Grant Tracker.
Log into Grant Tracker to complete the EEDI survey
What will your data be used for?
We’ll analyse and report on the anonymised, aggregated EEDI data every five years. Your data is completely confidential and won’t be used as part of our Grant review process.
This data will only be used for the purposed of understanding the diversity of our award holders and applicants to our Grant rounds. We’ll use this information to develop ways to reach and support under-represented groups in the MS research community. Our other strategies outlined in our action plan will also help towards this.
We’ll continue to encourage Grant Tracker users to share their EEDI information with us. That way we can monitor how well our strategies are working to improve inclusion and diversity over time.
What we know so far about diversity in our funded research and advisory and review panel
We’ve now analysed and published data collected from our applicants, award holders and governance members across our 2022, 2023 and 2024 award rounds.
'Award holders' are applicants that’ve been successfully awarded research funding.
Our governance panel members are researchers, clinicians, MS healthcare professionals and people affected by MS that sit on 'advisory and funding panels'. These panels, like our Research Strategy Committee, guide our research programme and oversee many of our funded projects.
Key findings from the 2022-2024 demographic data
Our applicants and Award holders
- 14% of our 2022, 2023 and 2024 applicants are from a minoritised ethnic background
- There was a 28% success rate for our 2022, 2023 and 2024 applicants from minoritised ethnic backgrounds compared to 29% for white applicants
- 54% of our applicants awarded funding in 2022, 2023 and 2024 identify as female
- 7% of our 2022, 2023 and 2024 applicants declared that they’re disabled
Our governance members
- 12% of our governance members are from an a minoritised ethnic background
- 50% of our governance members identify as female
- 5% of our governance members are under 40 years old
- 16% of our governance members have said that they’re disabled
Our previous reports
Inclusive research helps make sure the results of research reflect the full complexity of MS. Helping us better understand the causes of MS, how it develops, how symptoms are experienced, and how people respond to treatments, care and support.
Unfortunately, not all MS research fully considers the differences in how people experience MS. And some groups of people are consistently under-represented in research. This includes:
- People living in rural areas
- People with higher levels of disability
- People with less education or money
- Older people
- People from minoritisied ethnic groups
- Pregnant people
- Anyone who already experiences other health inequalities. For example, reduced access to healthcare professionals and services.
These problems exist in every part of the research pipeline. From understanding biology in the laboratory, to developing strategies for symptom management, slowing or preventing progression, and even preventing MS from developing in the first place.
Challenges to taking part in research
Many researchers are trying to make their studies more inclusive. But many people continue to face barriers that mean they can’t take part. These barriers can include:
- Travelling long distances to trial sites or taking time off work to take part can be difficult. Especially for people who take care of others, people who don’t have much money, or people who have mobility problems.
- Trials may not be available near smaller towns or rural areas.
- Some people who don’t speak English well or have difficulties reading may find it difficult to understand complex trial documents and consent forms.
- Some research is only advertised online. But not everyone has internet. Or knows how to use it.
- Some people don’t trust medical research because of unethical trials undertaken in the past. Or because of bad experiences they’ve personally had with healthcare professionals.
- In some communities there may be stigma or shame around talking about health problems. Or they may be influenced by cultural or religious beliefs that might make them feel unsure about taking part in research.
- Clinical studies often need rules about who can and can’t take part. These are called inclusion and exclusion criteria. They help to keep people safe and make sure the trial gets clear results. But sometimes, these rules can leave people out unnecessarily. For example, older people, people with higher levels of disability, people with other health conditions, or people who are pregnant or breastfeeding.
- Lots of people simply don’t know how research works, or how to take part in it.
How can we help you?
Making clinical research more inclusive is a job for all of us. And we’re here to support you. Whether you’re just starting to design a study or are in the process of looking for people to recruit.
We’ve collected a list of resources below to help you. And you can get in touch with us at [email protected]
We’re here to help you embed EEDI into your research. Explore our collection of resources to help you design and deliver more inclusive MS research.
Monitoring and evaluation of diversity of study participants
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We’ve created a template survey for collecting demographic data in a sensitive and ethical way. Using this template helps us make sure we’re collecting and reporting data consistently across our funded studies.
Download our template survey for demographic data collection
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We've developed an FAQ guide to help you understand how to collect, store, and share demographic and EEDI data throughout your project.
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The EDIS group have produced a guide offering help for collecting demographic data and strategies to improve engagement and response rates to your survey.
Designing and undertaking inclusive research
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Based on their experience of participation in REFUEL-MS, the REFUEL-MS trial team created a set of recommendations aimed at improving diversity and inclusion within MS intervention studies.
Read their recommendations to improve diversity and inclusion in MS interventions
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The NIHR's INCLUDE toolkit provides essential information about underrepresented groups in clinical research. including the barriers they face, and best practice examples for improving their inclusion in research. It also includes a framework to help researchers design inclusive studies. Frameworks developed by INCLUDE:
The INCLUDE Ethnicity Framework
- The Centre for Ethnic Health Research offer training to help you with cultural competency, inclusive and diverse research participation and effective community engagement. Fees apply for each course.
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The MESSAGE project has produced a resource providing training for how to consider sex and gender in research studies.
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The NIHR have collated resources to provide you with best practice examples and tools for navigating regulatory frameworks when considering the adoption of remote methods of trial delivery.
Inclusivity and diversity plans
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The MHRA and HRA now recommend developing an inclusivity and diversity plan for your research. This plan helps make sure that you address potential barriers to participation when you design your study.
Read the MHRA and HRA Inclusivity and Diversity Plan
We suggest using the NIHR INCLUDE project Toolkit to help you design your plan.
EEDI in public and patient involvement (PPI)
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The NHS have a good practice guide offering practical advice for how to engage with marginalised people in health research. This will help you make sure your research is representative and inclusive.
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The Race Equality Framework is a self-assessment tool to help you improve racial equality in PPI in health and care research.
Our organisational strategy puts diversity and inclusion front and centre of everything we do.
Read about our Organisational Strategy
Get involved in our work
We're looking for people to join our EEDI Reference Group to help us deliver this strategy.
Email us to find out more about joining our EDI reference group
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