Looking forward: next steps towards Race Equality in Research

To be sure that new treatments will work for everyone, we need everyone with Parkinson’s to be represented in research. 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.

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 and mixed heritage in Parkinson’s research.

Read about a specific risk factor found among people of African descent. 

Highlights of our work so far

In 2021 we:

• launched the Race Equality in Research project
• started recruitment for a steering group of people connected to Parkinson’s including people from minority ethnic backgrounds
• teamed up with organisations to help us reach broader audiences. We did this by talking with leaders from organisations who work within a variety of ethnic minority communities.

In 2022 we:

• started work on our first priority to build relationships with communities who have previously been excluded from research opportunities
• grew the Race Equality in Research steering group to include new members
• held our first community-building event in Hounslow, West London. Read more about the Living Well with Parkinson's event in Hounslow on Medium.

In 2023 we:

• started attending events for healthcare professionals to spread the word about our work
• expanded the steering group even further
• held 2 more community events in Brixton, South London, and Bradford, Yorkshire. Read more about our Race Equality in Research events
• launched a page for researchers with resources on how to improve diversity in research studies. Find out more about our Race Equality in Research project.

As we draw towards the end of the year, we’re starting to look forward to setting goals to take this work even further in 2024. Thanks to the suggestions of the steering group and feedback from our 2023 Research Support Network survey, we’re pleased to share our renewed priorities for the year ahead.

1. Build a network of people from diverse backgrounds

We’re proud of the work that we have already done towards this priority. But there is still more work to be done. In 2024, we want to continue 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, representing, and elevating the voices of people from minority ethnic backgrounds.

Part of our work on this priority will involve holding more events that are tailored to specific communities. These events are a place to come together and share experiences about living with Parkinson’s. Our next event will be an online Living Well with Parkinson’s event for Black communities. The event is free and open to everyone, but families affected by Parkinson’s from African and Caribbean backgrounds are especially welcome.

Register your interest for research events by filling out this Google form.

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. So over the last year, we’ve started making connections with Parkinson’s nurses. We want to equip them with what they need to be able to signpost their patients to research opportunities.

We’ll build on this in 2024 by attending more events, making connections and supporting healthcare professionals to improve their confidence and skills to recruit people to clinical trials. We’re particularly interested in building relationships with professionals who work in diverse areas of the UK and supporting them in whatever way we can. This way we’ll help to improve access to opportunities to take part in research for everyone.

If you are a healthcare professional interested in being involved in this work, we’d love to hear from you. Email Alex Edwards, Research Participation and Engagement Manager at [email protected].

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.

Over the past few years, we’ve been working on adapting our communications to make sure that they are up to date and relevant. We refreshed our Get Involved in Research leaflet, with the support of our Participation Steering Group, to bring it in line with the needs of people who are exploring research for the first time.

Order a free copy of our Get Involved with Research leaflet from our online shop.

In 2024, we want to go even further with our communications. To do this, we need to expand on our photography to ensure that everyone can see themselves in what we share. We want to work with communities that are underrepresented in research to make sure that the language we use is easy to understand and culturally appropriate. And we want to find opportunities to provide information about research in a variety of languages spoken across the UK.

We’ll also be exploring other ways of sharing information. We’ll work on developing messaging in other formats, like videos or images. And reaching out in different ways, like appearing on podcasts and radio programmes, or writing for local newspapers to help spread the word.

4. Strengthen our processes to make the research we fund inclusive

As the largest European charitable funder of Parkinson’s research, we have a real opportunity to use our influence to make sure that research is accessible to all. This means funding research that is relevant and inclusive of people from minority ethnic backgrounds.

We’ve already been updating our grants processes, and looking at how we’re doing so far so that we know where we can go. As part of a Parkinson’s UK grant, researchers can now request specific funds for training and activities to help increase diversity in their research studies. This means that researchers will have funds that can help with actions like translating research documents, or funding support staff who are already working within diverse communities. 

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 2024, we’ll build on some of what we’ve learnt already, and 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. Help researchers make their own studies accessible and inclusive

This year we’ve added a new priority area, based on discussions with the Race Equality in Research steering group. 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.

Over the last few years, we have been working closely with pharmaceutical company UCB. One project we’ve helped with this year has supported focus groups with people living with Parkinson’s from ethnic minority backgrounds from the US and UK. These groups aimed to make sure the voices from these communities were heard and their needs captured, in the design stage of a new clinical trial in Parkinson’s. We want to support future projects like this, making sure our impact is felt across the sector.

Find out more about how we support patients and public involvement in research.

We’re grateful to all of our Race Equality in Research steering group members. They provide their time, experience and insight, without which it would be impossible to do any of this work.