When it comes to advancements in the care and treatment of Parkinson’s, research is key to informing and influencing the way therapies are trusted, adopted, prescribed, and followed. But what happens when access to participation in research and even the design of investigations neglects to consider a diverse audience?
- Why diverse participation in research matters
- What researchers get wrong about designing and recruiting for diverse participation
- What leaders in health disparities and Parkinson’s research are focusing on right now
- What role research can play when it comes to changing equity and access to Parkinson’s care
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Note: This is not a perfect transcript, but it’s close.
- The medicine of the future is personalized and precise, but if not all people living with Parkinson’s are represented in clinical research, researchers and physicians may not understand the many nuances of Parkinson’s
- Numerous barriers exist that can limit the diversity of participants in a clinical trial, including eligibility requirements, time commitments, trust issues, awareness (of the trial and sometimes of Parkinson’s in general), location, a trial care partner, a researcher’s need for expediency, and more
- In most clinical trials, a lot is asked of participants. “There’s a burden we put on participants to travel, to miss work, to find childcare if needed,” Dr. Dahodwala says. “And we often don’t reimburse for these.”
- Many government-funded research institutes are working to build a diversity of participants into their trials and studies. Nonetheless, there is much work to be done in this area
- Throughout the country and the world, there are many underserved populations that are not being diagnosed with Parkinson’s, including, in large part, people of color and women. The good news, Dr. Jackson says, is that there’s “an emerging view that we need to have a better handle on understanding how prevalent Parkinson’s really is in our society.”
- To empower underserved communities, researchers and physicians can connect and work with community health workers and develop incentive structures that allow the community to derive value from participation in a study or trial
“There are three things we can offer in our research studies. We can offer money; we can offer time; we can offer information. The best studies, the ones that will achieve lasting diversity and retention over time, will offer all three.”
-Dr. Jonathan Jackson, PhD
- If members of underserved communities trust researchers enough to engage with a clinical research study, the researchers will have successfully identified and minimized the number of barriers that had prevented access to quality clinical care. “That might mean that you have to explore new kinds of research designs, like decentralized trials or virtual trials or clinical trials, that are within reach of most people,” Dr. Jackson says
- To reduce inequities in research, you have to first reduce inequities in clinical care
“It starts with identifying patients and identifying what the barriers are to getting appropriate care. Networking with physicians in the community. Making those community connections and building a pathway to getting expert consultations when needed.”
-Dr. Nabila Dahodwala, MD
- Another way to do this is to standardize many aspects of patient intake, disease management, and conversations about research, so all people with Parkinson’s have access to the same quality care
- Building trust is often less important than empowering people. “Trust is hard to win and easily lost,” Dr. Jackson says. “We should engage with communities as partners, as equal partners. And the way to do that is to ensure that they have the tools and the power to do the right thing. If we can do better about giving the tools and the resources to communities directly, I think they will feel empowered to engage with clinical research in a way that truly benefits them.”
“If you have power, you don’t have to trust anybody because you know how the system works, and you know how to engage with it in an equitable way that benefits you and your community.”
-Dr. Jonathan Jackson, PhD
- Women may be underrepresented in the world of Parkinson’s because of structural, systemic, gender-based barriers. “I think part of the reason men are easier to recruit is that many of our studies require a partner or a caregiver, and men are more likely to have caregivers than women are,” Dr. Dahodwala says
- Often, when researchers are recruiting participants for a study, they are focusing on who will be most able to complete it. “There is a bias that really creeps in there,” Dr. Jackson says. “This has been demonstrated in Parkinson’s research studies. Researchers think things like, ‘I want somebody who won’t be stressed out, somebody who could stick with it, somebody who’s likely to benefit.’ And unfortunately, when you have this interior life of constraining who that is, you tend to end up with very privileged populations.”
“In the Parkinson’s world, that tends to be disproportionately relatively wealthy, well-educated white men who have had a diagnosis for more than seven years, who live in an urban center along the east or west coast United States. And if you are not all of those at the same time, you are much less likely to be asked or to be involved in a research study.”
-Dr. Jonathan Jackson, PhD
Resources and events Discussed in the Webinar
Learn more about health disparities and Parkinson’s
We began our Health Disparities and Parkinson’s Webinar Series on August 6, 2020, as part of our commitment to understanding and working to change deeply rooted inequities in healthcare that black, brown, and indigenous communities; LGBTQ+; immigrant, and refugee communities; and people of color experience.
Sign up for the webinar series to learn more about this crucial area in the world of Parkinson’s. You can watch past webinars and learn more about our past and future panelists here.
This webinar series is presented in partnership with Dance for PD®, a program of the Mark Morris Dance Group.