Race Equality in Research

Find out about our Race Equality in Research project. And discover how you can help us work towards race equality in Parkinson's research.

Our Race Equality in Research project

We believe Parkinson’s research should involve, include and represent all members of the community. 

At Parkinson's UK, we are committed to producing a long-term strategy to increase engagement and participation in Parkinson’s research with people from Black, Asian and Mixed Race backgrounds. 

Join our online support group

We're working to develop an online information and support group to connect people affected by Parkinson's from Black, Asian, Arab or mixed heritage backgrounds. 

The group will provide space to chat, and get information about support, activities, and research.

Resources and support for researchers 

All research should aim to be representative of everyone. Only then will we be able to develop treatments suitable for everyone with Parkinson's. Considering the inclusivity of your research early can help improve your study and participation, while also working towards that goal. 

Use the resources below to help plan and design your research, and think more about ethnicity and inclusion.

Hear from members of the public talking about why researchers need to think more about ethnicity and inclusion when designing their studies, as part of the INCLUDE Ethnicity Framework work.

Watch the video on YouTube.

Cultural competency is understanding, communicating with and interacting with people from across cultures in a way that values diversity and promotes inclusivity. It is an important aspect of undertaking health research and a good place to start your learning.

The National Institute for Health and Care Research (NIHR) and Centre for Ethnic Health Research (CEHR)have produced a video which demonstrates the importance of cultural competence.
Watch the NIHR/CEHR introduction to cultural competence video on YouTube.

More training and resources:

There are many toolkits and resources available to help you plan your research and make sure it's representative of everyone. Using these tools as early as possible while planning your research can help you get the most out of them.

Below are some examples of resources you can use to get started. This is not an exhaustive list, but it's instead a good starting point to understand why researchers need to play an active role in ensuring diversity in research.

NIHR and CEHR toolkit 

This toolkit is designed to help researchers develop more relevant research questions, consider the engagement of ethnic minority communities in a more structured way, and provide tips on better participation and dissemination of research findings. Find out how to access the toolkit on the East Midlands Workforce Development website

INCLUDE Ethnicity Framework

The INCLUDE framework aims to help trial teams think carefully about which ethnic groups should be included in their study, identify challenges to making this possible, and work to reduce these challenges. The framework needs to be used at the trial design stage before funding is in place for it to work best. Find out more about the INCLUDE framework on the Trial Forge website. 

NHS Increasing Diversity in Research Participation guide

This NHS guide provides meaningful insights into working with groups where participation in research is low.  Read the guide on the NHS England website. 

Egality Improving Diversity in Health Research and Trials report

Egality is a start-up focused on improving diversity in health research and clinical trials. This report, produced in 2020 in consultation with a number of medical charities including Parkinson's UK, outlines some of the recommendations and resources available to help researchers increase the diversity of people actively involved in research. Read Egality's report [PDF, 843KB].

FOR Equity website

The Focus on Research (FOR) Equity website has a number of tools and resources to help build research studies that address health inequalities. Find out more on the FOR Equity website.

CEHR support

The Centre for Ethnic Health Research also offers expertise and support on a number of topics, including patient and public involvement and engagement, trial design, participant recruitment and translation and cultural adaptation. Request support on the CEHR website  (fees may apply). 

Language can be a key barrier preventing people from taking part in research. Up to 1 million people in the UK cannot speak English well or at all, and are less likely to report 'good' health than English speakers. Finding ways to reach the people you want to include in a language that is comfortable for them can make a huge difference and improve inclusivity. 

We also recognise people who have good spoken English may struggle to understand health information. Writing in a way that is not accessible to all can perpetuate health inequality.

Patient Information Forum (PIF) has guidance on translation to help more people access health information they can understand and use. You can view their quick checklist of what to consider when starting health information translation on their website. 

PIF members can also access the full translating health information guide on its website. 

Building relationships and establishing trust with community groups can help you gain a better understanding of how people wish to be engaged in research. Here are some resources that can help you think about how to engage people in a meaningful way:

Read examples of how researchers are already working to improve diversity in their research studies:

Our strategy on equality, diversity and inclusion (EDI)

Find out more about our commitment to improving access to opportunities and support for everyone in the Parkinson's community.