Race Equality in Research
Find resources to help you make sure your research is inclusive and welcoming to everyone.
Our Race Equality in Research programme
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.
Explore our work
We kicked off our project to drive forward race equality in Parkinson’s research with the help of our steering group in 2021.
Read our blog to see what we've done so far and how we are working towards priority areas identified by our Race Equality in Research steering group.
Our research grants are designed to enable our funded researchers to request specific funds to help increase diversity in their research studies.
Find out how we can support you to make sure your research is inclusive and representative of people from global majority backgrounds.
Our Race Equality in Research steering group is made up of people affected by Parkinson's, community leaders, and health and research professionals from global majority backgrounds.
If you'd like to join as a member, get in touch with Liz, Research Support Network Lead at [email protected].
Resources for your work
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.
Cultural competency is understanding, communicating with and interacting with people from across cultures in a way that values diversity and promotes inclusivity. It's 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:
- NIHR and Ethnic Minorities Research Inclusion Group offer a free course on cultural sensitivity in research. Create an account in NIHR Learn and search 'An Introduction to Cultural Sensitivity In Research' to access the course.
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.
Inclusive research
Researchers in Greater Manchester have put together an online course for researchers in health or applied health research to help you identify barriers to inclusive research, and find ways to overcome them. Visit the website to take the course.
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.
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.
Other resources:
- Ethnic Minority Research Inclusion group
EMRI is a regional initiative dedicated to improving the inclusivity of research across communities. Its mission is to ensure that people from all backgrounds, particularly those historically under-represented, have better opportunities to participate in, shape, and benefit from health and care research.
EMRI can offer support with translation of resources, alongside a number of other workstreams including cultural competency, reverse mentoring, and monthly peer support.
Visit the EMRI website to request support. - Templates for accessible patient information
The MAPLE (Making trials more accessible through better patient information leaflets) project, led by the University of Bristol and National Voices, has co-designed a template for an accessible patient information leaflet, following consultation with a number of groups including people from global majority ethnic backgrounds.
Visit the MAPLE 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:
- "It's not about us!"
Equality charity brap has produced the "It's not about us!" manifesto, as a result of engagement with over 300 older Black and minority ethnic people. It sets out what people think about current engagement practices and how they wanted to be involved in decisions. Read the "It's not about us!!" manifesto [PDF, 1MB]. - Varied Voices
This free course, presented by BMJ Learning, provides training on how to improve inclusion of underrepresented voices in research through public involvement. It explores the practical strategies and best practices for creating an inclusive research environment. Visit the BMJ Learning website.
INVISIBLE - addressing inequalities in health research
If health research does not represent people from diverse ethnic groups, it can mean that healthcare treatments and services are less safe, accessible, and effective. Parkinson's UK was one of 8 health charities that came together to work with Egality, community organisations, and people with lived experience to co-produce an awareness raising film.
Our aim is to ensure everyone is represented and actively involved in shaping health research, to ultimately improve treatments and services. The spoken word film focuses on why diversity in health research matters for people, families, and communities.
Case studies
Read examples of how researchers are already working to improve diversity in their research studies:
Researchers from The East London Parkinson’s Disease Project are working with the local Bengali community and other under-represented groups in the region to improve representation in their research. Read about their learnings so far on our research blog.
In the search for better treatments for Parkinson’s, many researchers are exploring new, advanced approaches such as cell or gene therapy. Dr Kali Barawi, a researcher at Cardiff University, worked closely with people with Parkinson’s to understand how to ensure that advanced therapies are accessible to everyone with the condition.
In partnership with members of the Race Equality in Research steering group, we've held events for specific communities. The events aimed to normalise talking about Parkinson’s, providing a space for people to meet with others with the condition, and changing the narrative about Parkinson’s to show how people live well with Parkinson’s.
Our strategy on equity, diversity and inclusion (EDI)
Find out more about our commitment to improving access to opportunities and support for everyone in the Parkinson's community.