Taking steps towards race equality in Parkinson’s research

This means what we know about the condition and the treatments being developed does not represent the whole Parkinson’s community.

That’s why we launched our race equality project in March 2021. The aim of the project is to develop a clear roadmap for the charity to increase the representation of people from Black, Asian and Mixed heritage backgrounds in research.

What have we done so far?

The first step was to form a steering group for this work made up of people with Parkinson’s and research professionals from Black, Asian and Mixed heritage backgrounds. We held our first meeting in May 2021, and the group is guiding and shaping the project every step of the way.

One of the crucial needs the group highlighted was the importance of reaching out and listening to a broader range of people to understand perceptions of research and Parkinson’s UK in different ethnic communities.

To help us reach this broader audience, we decided to work with 2 expert patient engagement organisations: COUCH Health and Egality Health. Read the news story about our partnership.

After working together to create a plan, in December 2021, we:

• held a workshop with leaders from organisations who work within different ethnic communities
• interviewed individuals with Parkinson’s from Black and Asian backgrounds who are not connected to Parkinson’s UK.

What have we learnt?

Through the work we’ve done so far we’ve identified three key areas that we need to understand and address to make research more accessible and relevant to people from different ethnic backgrounds.

Cultural differences in the perception of Parkinson’s

In some cultures, there can be heightened levels of stigma and shame associated with having a condition like Parkinson’s. This affects people’s ability to seek information and support, and to get involved in research.

One of our steering group members commented:

"There is this trait that’s particularly common in Asian cultures of 'losing face'. It can range from feelings of embarrassment, leading to a reluctance to talk about conditions like Parkinson’s, to actively concealing from others due to shame or a desire to 'keep it in the family.

"In extreme cases, it can result in being ostracised from family and community. I remember when I told my parents, one of their first reactions was, 'Don’t worry, we won’t tell anybody,' in the hope it would be protecting me."

Mistrust of research and its benefits

This may be due to previous poor experiences of research which have failed to deliver on the promised benefits. Research also needs to be personally meaningful for people to participate, and the current research and the potential benefits may not be relevant to all communities.

Some reflections from our steering group members:

• "Initially I equated research with 'clinical trials' which would involve invasive procedures or drug trials which I was reluctant to take part in. Lockdown gave me the opportunity to experience wider forms of research participation. I now regularly take part in online surveys, questionnaires and interviews from the comfort of my home."
• "Saying that there is under-representation in research and that people need to get involved isn’t enough. There needs to be a reason that’s relevant to me, my ethnicity, race or demographic."
• "As researchers, we’re all buried in our little niche. We work on things that we believe to be critical but they may not be important or applicable to people living with the condition. I think we could tackle this by creating more opportunities for researchers and people from different communities, to talk and understand each other better, build trust and ultimately better research."

Lack of appropriate information and support

Current information and support are intended to cater for everyone with Parkinson’s but are often not accessible and inclusive for people from minority ethnic communities. This is also true of information and support available to encourage people to get involved in research.

Some comments from the steering group:

• "I didn’t contact Parkinson’s UK until 10 years after I was diagnosed. I didn’t know anything about the organisation and none of my medical professionals (my GP, neurologist and Parkinson’s nurse) mentioned the charity to me. Now I’ve discovered the charity I am learning so much every day. I think it’s important that medical professionals know about the charity and share this with their patients."
• "I love the idea of mentors. I think that’s far more useful than having a vague group that you go to as that can be quite intimidating, especially when the average age is 20 to 30 years older and male. And mentors could be the ideal people to introduce the idea of research which is so important."
• "I feel that a lot of the problems stem from a lack of culturally appropriate information. Increasing awareness and understanding of Parkinson’s in ethnic communities is an important first step, and then it becomes easier to explain the benefits of becoming involved in research."

What happens next?

We now want to take what we’ve learned forward to create a clear plan with concrete activities to drive forward representation in research in 2022.

We’ll be working with our fantastic steering group and partners to put a plan together in the coming weeks and we will share this as soon as we can.

As this work develops and grows we’re keen to hear from anyone who is interested in getting involved.

Please get in touch by emailing [email protected]