Five experts discuss the health disparities faced by people with Parkinson’s, why healthcare inequalities have been neglected for so long – and what needs to change
A recent webinar hosted by US Parkinson’s charity Davis Phinney Foundation, in partnership with Dance for PD, invited a panel of experts to talk about the inequities in healthcare experienced by black, brown, indigenous, LGBTQ+, immigrant and refugee communities in the US. We share three key takeaways from their discussion.
David Leventhal, programme director of Dance for PD, kicked off the talk by recognising that the lack of diversity at events, classes and support groups for Parkinson’s is not “an accident” but “the result of deeply rooted systemic health and cultural inequalities, inequities and disparities”.
“As somebody who leads dance classes for people with Parkinson’s around the US, I witness inspiring participation from thousands of people, but a notable lack of racial and cultural diversity in those programmes,” says Leventhal. “For an art form like dance, that lives among and celebrates all cultures, all people and all bodies – it is particularly disheartening to know that there are so many people that are not yet in the room with us.”
1. Addressing language barriers
A decade ago, there were 65 million people in America who needed to or preferred to speak a language that is not English, says Dr Nicte Mejia of Harvard Medical School.
“Our current system is not set up in a way to help them get an early diagnosis or the best possible care,” says Dr Mejia. “Parkinson’s community really needs to think about and change the diversity in our healthcare teams. Across the continuum, we need greater diversity – racial, ethnic, linguistic and gender – so that patients have a different experience.”
For example, says Dr Mejia, when it comes to clinical research it has been found that lead researchers who speak languages other than English “tend to be more mindful about translating all their clinical research forms into other languages and recruiting people who speak other languages.”
“People are not getting the same care,” says Dr Nabila Dahodwala. In her research into health disparities, Dr Dahodwala found that people who do not speak English in the US and who start to experience symptoms of Parkinson’s are often unsure of where to go or who to tell.
2. Building trust through cultural understanding
When it comes to earning patient trust, Dr Jonathan Jackson, executive director of the Community Access, Recruitment and Engagement (CARE) Research Center at Massachusetts General Hospital, says: “Trust is not where you begin, you begin with empowerment and partnership.
“The best physician is one who can understand you, can understand what’s important to you and can connect you to services, medications, treatment – and can build a plan with you that takes into consideration all of the contextual needs and desires that you have.”
Dr Claudia Martinez, Hispanic outreach coordinator, Muhammad Ali Parkinson Center, says she builds trust with people in Parkinson’s community by “understanding their cultures, the environment that they live in and where they come from.
“You need to build what I call ‘cultural empathy’, when you’re willing to put yourself in the shoes of that community.”
Dr Mejia shares that in her practice, she starts her appointments by asking patients to talk her through their life as a way of avoiding assumptions.
Dr Altaf Saadi, a neurologist at Massachusetts General Hospital who works with individuals that have fled persecution in their home countries from across the world, says there is a need for a wider community involvement in healthcare to improve trust: “We need to be thinking about doing research that is partnered with community-based organisations. We can’t start with the assumption that people are going to trust us because we’re doctors.”
3. Starting conversations
To improve the inequities in healthcare, we need to have difficult conversations, says Dr Jackson. He emphasises that professionals should not hold back on starting conversations: “Don’t wait until you have perfect representation on your team, all the resources in place and a very detailed plan that is well-funded and sustainable before you reach out to the community.”
Instead, Dr Jackson says, professionals should “be vulnerable” and recognise areas where they may lack understanding. “Do not make assumptions about how the conversation is supposed to go or that somebody should be grateful that you’re there,” he advises.
Watch the full webinar: