Working towards Race Equality in Research
We’re striving to improve representation in Parkinson’s research. In 2021, we launched the Race Equality in Research project, to focus our work towards this goal. This blog outlines our priorities, and the progress we’ve made so far.
We need everyone with Parkinson’s to be represented in research, otherwise we risk that future treatments might not work for everyone. But we know that, right now, that’s not the reality.
This is a problem as it impacts our understanding of Parkinson’s as a condition. Cultural and even genetic differences between groups of people mean that, unless everyone is included in the research, any future treatment might not be right for everyone. As representation increases, we find out more about Parkinson’s and potential differences in how the condition looks, or might even be treated, in all people.
Through our Race Equality in Research project, we’ve been working with a dedicated steering group to try and improve representation of people from Black, Asian, Arab and mixed heritage backgrounds in Parkinson’s research.
Highlights of our work so far
In 2021 we:
- launched the Race Equality in Research project by recruiting for a steering group and teaming up with specialist organisations.
In 2022 we:
- started work on our first priority to build relationships with communities who are underrepresented in Parkinson’s research and held our first community-building event in Hounslow, West London.
In 2023 we:
- started attending events and reached over 400 healthcare professionals to spread the word about our work and encourage them to get involved
- held 2 more community events in Brixton, South London, and Bradford, Yorkshire
- added a way for our funded researchers to request specific funds to help increase diversity in their research studies, such as translating research documents, or funding support staff who are already working within diverse communities
- initiated work with pharmaceutical company UCB and the Parkinson’s Foundation to increase diversity in Parkinson’s clinical trials
- launched a page for researchers with resources on how to improve diversity in research studies.
In 2024 we:
- established a monthly online support group for people from Black, Asian, Arab and Mixed Heritage backgrounds. Learn more about the group.
- supported more “Living well with Parkinson’s” events online and in person in Lewisham, South London, and Sheffield, Yorkshire. Read more about our Race Equality in Research events.
- partnered with a company called Egality to hold workshops with people from Black, South Asian and Arab backgrounds to come up with recommendations to improve our research communications to make them more welcoming and accessible
- ran workshops on the importance of increasing diversity in research for our funded researchers and people who are interested in applying for our grants
- collaborated with other health charities to produce a film encouraging greater representation in health research. Watch the video on YouTube.
Our priorities for the future
We’re proud of the progress, but there’s still a long way to go. In 2024, together with the Race Equality in Research steering group we refocused our priorities for the project. Take a look at our priorities, and the progress we’ve made so far.
1. Build a network of people from diverse backgrounds
We know it’s important that people from diverse backgrounds with lived experience of Parkinson’s are at the heart of what we do. In 2024, we continued to expand our Race Equality in Research steering group, and to work with community groups and other organisations that will help us build relationships and establish trust. This is essential so that we can keep listening to and elevating the voices of people from minority ethnic backgrounds.
Jagdeep joined the Race Equality in Research steering group in 2023. He said:
"Being part of the group has been great, and has helped me make connections for all the other things I do, like running boxing classes, organising research talks, and getting out to meet other people like me."
This year we launched an online support group for people from Black, Asian, Arab and Mixed Heritage backgrounds, with direction from the Race Equality in Research steering group. The group is there to provide a community for people living with Parkinson’s and their loved ones, as well introduce research subjects and be a place where people can share their experiences.
Find out more about the group and how to join.
2. Help healthcare professionals signpost everyone to research
People with Parkinson’s have told us that they want to hear more about research from healthcare professionals. This is especially important for people from minority ethnic backgrounds, who are more likely to not have any other connection to the wider Parkinson’s community.
We’ve been attending events for healthcare professionals, particularly in areas of known ethnic diversity in the UK. In 2024, we reached a further 300 professionals through various events. We want to help professionals champion research, and improve their confidence and skills to recruit people to clinical trials. This way we’ll help to improve access to opportunities to take part in research for everyone.
In 2025 we’ll continue doing this. We’re working on an online training course that will help healthcare professionals find confidence in talking to everyone about research opportunities.
Annette Hand is a Parkinson’s Nurse Consultant and Professor of Nursing. She said:
“It's important that we, as healthcare professionals, are not just reserving conversations about research for people who are already putting their hand up to take part. We need to actively talk to every patient to make sure every person with Parkinson’s is taking part in research and their voices are heard. Everyone should have an equal opportunity to take part.”
If you’re a healthcare professional interested in supporting this work, please get in touch.
3. Make our communications clear and engaging
It’s important that all of our communications are clear, engaging and accessible to all. But also that people feel like they are represented and included in our work.
In 2024, we worked with health research charity Egality to ask people from Black, Asian and Arab and mixed heritage backgrounds how we could improve the way we talk about research in the leaflets that we use and on our website . The recommendations from the focus groups were so valuable in telling us what we are doing well, and what we need to work on. We look forward to implementing changes based on this feedback in the new year.
“Personal stories being shared is also very helpful because these stories are some sort of a motivation to persons like us, you know, and even care givers going through the stories can be motivated.”
- Focus Group Participant
The next steps for this priority will also involve providing information about research in a variety of languages spoken across the UK.
We also expanded on our photography and stories of being involved in research to be more representative of everyone with Parkinson’s, but we need to continue this to ensure that everyone can see themselves in what we share. We’ll also continue to explore sharing our messaging in other formats, such as video and local media.
4. Strengthen Parkinson’s UK processes to make the research we fund inclusive
In 2024 we’ve committed over £2m for Parkinson’s research through our grants programme. As a research funder, we have a responsibility, and influence, to make sure that the research we’re funding is relevant to and inclusive of people from minority ethnic backgrounds.
This year we held a number of equality, diversity and inclusion training workshops for our current and prospective funded researchers. We’ve built a session about the importance of making research inclusive into our new grant workshops, and have spoken to our funded researchers on how we can best support them to do this at our grantholder meetings held in September.
The EDI presentation and workshops were a wake up call for what we need to do.
- Grantholder meeting participant
In 2023, we updated our research grants funding to allow researchers to request specific funds for improving diversity and inclusion within their research studies. This year, we’ve seen more researchers apply for and use these funds. In our non-drug approaches grants scheme, applicants have requested Wi-Fi costs to help increase access for people with Parkinson’s to get involved and take part in their studies. Other applicants have also worked with organisations such as Caafi Health Ambassadors to help engage with underserved groups, and Devices 4 Dignity to lead and support their study design.
We have also started to see diversity be addressed in project grants we awarded this year. One project detailed how they were including a collaborator with expertise in dementia in Black African communities to help support recruitment within this community and that they had already acquired extra funds to help support travel. Another project grant included a collaborator in the research team to access genomic data and linked health records from ~100,000 participants of South Asian ancestry.
Find more resources to help make research more inclusive on our Race Equality in Research page.
We’ve also made it clear that we consider the needs of everyone who applies for our research grants, so that nobody should feel like they can’t reach out to us.
In 2025, we’ll build on some of what we’ve learnt already, and do more work to encourage researchers from diverse backgrounds to apply for Parkinson’s UK funding. We’ll also continue to work on our grants schemes, making sure that researchers are aware of the importance of considering diversity at the earliest stage of planning their work.
5. Use our influence to help make all Parkinson's research accessible and inclusive
While it’s important that we’re influencing the research we fund at Parkinson’s UK, these learnings can be applied to all Parkinson’s research. And thanks to the strength of our work so far, we’re finding that more researchers are reaching out to us for support.
In 2024 we also collaborated with 8 health charities and Egality to co-design a video outlining why everyone should be involved in shaping health research, alongside people with lived experience. The film, INVISIBLE, is now being shared by our funded researchers and beyond.
Watch 'INVISIBLE' on Egality's website.
"To live a healthy life is something we all deserve. We need every type of person represented in health research."
- INVISIBLE film
Looking forward
We know there’s still much to do. In 2025, we’ll be building on this progress, and focusing on ways to keep improving. Following our Joint Steering Group planning meeting in November 2024, we’ve highlighted a few key areas that we’ll be working on in 2025. This includes improving our data collection and reporting processes, considering new methods of communicating to reach new audiences, and evaluating the impact the project is having.
Thank you
We’re grateful to all of our Race Equality in Research steering group members, online event working group volunteers, and everyone who has played a role in shaping and pushing forward this project. They provide their time, experience and insight, without which it would be impossible to do any of this work.