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 to 2023 we:

  • launched the Race Equality in Research project by recruiting for a steering group and teaming up with specialist organisations.
  • built relationships with communities who are underrepresented in Parkinson’s research by holding events in Hounslow, Brixton and Bradford.
  • reached over 400 healthcare professionals to encourage them to get involved.
  • enabled our funded researchers to request specific funds to help increase diversity in their research studies.
  • 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.
  • 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.
  • held workshops with people from Black, South Asian and Arab backgrounds to make our research communications 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.

In 2025 we:

Our priorities for the future

We’re proud of the progress, but there’s still a long way to go. In 2026, 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. We’ve 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."

In 2024 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. And at Par-Con in October 2025, we had our first in-person gathering of the group.

"For the longest time, I've been diagnosed for 12 years now, I felt really socially isolated and I felt really like no one understood the language of Parkinson’s. So I feel like now I've got a community, or a space where people understand what I'm going through on a hard day."

online support group attendee.
 

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 2025 we developed a 30 minute online training course that will help healthcare professionals find confidence in talking to everyone about research opportunities. The resource was co-designed with our Race Equality in Research and Participation Steering Group volunteers. 

Share the online training course.

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 2025, we used the recommendations from work with health research charity Egality and a focus group of people from Black, Asian and Arab and Mixed Heritage backgrounds to improve the way we talk about research. We refreshed our research leaflet, and translated it into 5 languages identified as priority by the Race Equality in Research steering group. The leaflets are now available in Arabic, Bengali, Punjabi, Somali and Urdu on the Parkinson's UK shop.

Order the translated research leaflets for free from our shop. 

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 2025 we committed over £4m 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.

We've held a number of equality, diversity and inclusion training workshops for our current and prospective funded researchers, including in our new grant workshops, In September, we asked our funded researchers to report on how they are building in diversity to their research projects at our annual grantholder meeting.

The EDI presentation and workshops were a wake up call for what we need to do.

 - Grantholder meeting participant

We've updated our research grants funding to allow researchers to request specific funds for improving diversity and inclusion within their research studies. 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. 

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 

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 2025 we worked with a pharmaceutical company, the Michael J Fox Foundation and Parkinson Foundation in the US on a Health Equity Board. The goal of the board was to support diversity in clinical trials run by pharmaceutical companies. Together we outlined a list of actions that companies can focus on to make participation in these trials more inclusive. We're looking forward to seeing this work grow as it's implemented. 

Looking forward

We know there’s still much to do. In 2026, we’ll keep building, and focusing on ways to keep improving. Following our latest Race Equality in Research steering group meeting, we’ve identified a few key areas that we’ll be working on in 2026. 

This includes:

  • Doing targeted advertising to encourage researchers from all backgrounds to apply to Parkinson’s UK for funding
  • Increasing the number of stories we share from people from Black, Arab, Asian and Mixed Heritage backgrounds who have taken part in research
  • Recruiting a healthcare professional to our steering group to help us understand how we can grow our connections and influence
  • Amplifying the work of our Race Equality in Research steering group and encouraging other charities and funders to use our learnings and best practice
     

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.

Join our steering group

Members of the Race Equality in Research steering group have their say on what we should prioritise, and what matters most to them. We'd love to welcome new members to the group. If you'd like to get involved, please reach out to the Research team at [email protected].

Email the Research team
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