Driving forward race equality in research

As we celebrate International Clinical Trials Day on 20 May, it is important that we recognise that research and clinical trials into the condition don’t include representation from all people affected by Parkinson’s.

At Parkinson’s UK, we have chosen to begin by improving the representation of people of Black, Asian or mixed heritage. These groups represent up to 13% of the population in the UK but are currently underrepresented in UK research, and may have important underlying differences in terms of Parkinson’s.

This lack of representation is a problem for a number of reasons. Societal, cultural, and possibly even genetic differences are not being taken into account at the early stages of research. Which means that a potential treatment might not be appropriate for everyone.

That’s why, last year, we kicked off the Race Equality in Research project to make sure that voices of people underrepresented in research are included at every stage of the conversation.

A summary of what’s been done so far

• March 2021: We launched the Race Equality in Research project and started recruitment for a steering group which includes people connected to Parkinson’s, researchers, and healthcare professionals.
• May 2021: The first meeting of the steering group.
• December 2021: We teamed up with patient engagement organisations COUCH Health and Egality Health to help us reach broader audiences.
• December 2021: We held a workshop to identify key areas that we need to understand and address to make research more accessible and relevant to people from different ethnic backgrounds. We did this by talking with leaders from organisations who work within different ethnic communities. And we interviewed individuals with Parkinson’s from Black and Asian backgrounds who are not connected to Parkinson’s UK.
• February 2022 to today: Following the workshop, we have been focusing on using key leanings to shape what comes next.

Turning learnings into actions

Learning from the workshops and insights from our steering group has made it clear that just asking people to be involved in research is not enough. We need to frame our conversations to show how being more involved is of benefit to everyone. We need to provide inclusive and accessible information relevant to each group we are trying to reach and to decide on a strategy of how to do this.

Together, the following areas were identified as top priorities moving forward:

• Establishing relationships and networks to build trust and share opportunities to encourage equality, diversity and inclusion in research.
• Working with healthcare professionals to understand how they can support this work.
• Reflecting on and modifying our research communications to make sure they are inclusive.
• Look at Parkinson’s UK funded research and our processes to ensure we have considered how to make this more inclusive and lead by example.

Building relationships and networks

We also want to make sure that we are working with existing groups and events that reach people from ethnic minority backgrounds in a way that benefits everyone. One way we’ll do this is through collaborating with community groups to identify and organise opportunities to share information. In April, we were invited to join an event at the Peepul Centre in Leicestershire, to chat with members of the South Asian Parkinson’s community cafe.

Alex Edwards, Research Participation and Engagement Officer at Parkinson's UK, said:

"The event was a great success, thanks to the organisation of Hema, Parkinson’s UK local volunteer, and Katie Smith, Parkinson’s UK Area Development Manager. It was hosted in the local community centre where a monthly Parkinson’s support cafe is held, with a small group of around 30 people with Parkinson’s and their loved ones. It felt like a safe space for everyone to engage and ask questions.

"It was great to be able to have 1-to-1 chats with people throughout the day. We also gave a presentation about Parkinson’s research, which we adjusted to suit the group following advice from Katie and Hema. The presentation got a great reception and lots of questions!

Alex Edwards, Research Participation and Engagement Officer.

We are happy to come and speak at other similar events, please email us at [email protected] if this would be of interest to you.

Connecting with healthcare professionals

Under the direction of our steering group, we will focus first on building relationships with healthcare professionals to create a network that we can work with to reach more people. We're also looking to recruit healthcare professionals from ethnic minority backgrounds to join our steering group.

We'll aim to work closely with the Parkinson's UK Excellence Network and Parkinson's Connect to expand our reach and work with established networks of healthcare providers in Parkinson's UK. We're also planning to create resources which can be shared by healthcare professionals, providing information for minority groups about how to get involved in research in an inclusive and accessible way.

Improving our processes

Parkinson's UK is a significant funder of Parkinson's research and therefore it is vital that we use our influence and look at our own processes in line with the identified priorities from the Race Equality in Research steering group.

Part of this means making changes to the way we talk about inclusion in our funding and research. Our grants applications are being updated to make inclusion a priority for researchers, and ensure that a diverse group of people are included in their work.

Alongside this, we'll be looking more closely at the diversity of the people that we fund to carry out research, making sure that everyone's voices are included at every level. We're also considering a Diversity Champion scheme, with support from other teams, to improve diversity charity-wide.

Working with you

Our Race Equality in Research steering group is leading these conversations and directing our work for the future.

We're keen to expand this group and include more voices of people affected by Parkinson's. We are especially looking to include more people with Parkinson's, but we also need to hear from family members, carers, healthcare professionals, and researchers, making sure everyone is represented.

Shafaq Hussain-Ali, member of the steering group, said:

"Being involved in the Race Equality in Research steering group has been a fantastic opportunity to partake in trying to change the diversity of research participants. Through monthly meetings and brainstorming sessions we are putting into place an action plan to increase the awareness and participation amongst different ethnic groups in research.

"I strongly feel that research is key to making further progress in the treatment of Parkinson’s, which is why I feel the work of this group is so important."

Shafaq Hussain-Ali, a member of the steering group.

Please help us spread the word to people who might be interested. Find out more about joining the Race Equality in Research Steering Group.