MJFF Fellow Working to Raise Black, Minority Presence in Research
A Michael J. Fox Foundation (MJFF) research fellow is leading a study into the role of social determinants in medical mistrust and the lack of clinical trial participation by people with diseases such as Parkinson’s who belong to racial, ethnic and social minority groups.
Paris Adkins-Jackson’s study, titled “The Trials and Trust/Investigacion y Confianza,” aims to determine how the conditions under which individuals are born, raised, live, work, and age influence their willingness to take part in clinical research. She also hopes to establish ways to overcome participatory barriers.
To that end, Adkins-Jackson plans to interview 20 Black, indigenous, Hispanic, and transgender people in the United States who have completed a clinical trial — remotely or in person — within the last decade.
The study, being run is in partnership with the Community Access, Recruitment and Engagement (CARE) Research Center at Massachusetts General Hospital, is recruiting volunteers. For more information, send an email to Adkins-Jackson at [email protected] or to study co-investigator Angie Sanchez at [email protected].
The investigation, which Adkins-Jackson described in a press release as being“long overdue,” is particularly timely given measures underway to enhance diversity in research studies.
“We’ve had literature and papers that span over 40 years with the same conclusion of disparities existing,” said Adkins-Jackson, PhD, whose work is focused on improving health outcomes and eradicating health disparities in underrepresented communities. “I love that the field today is saying, ‘No, we have to be better.’”
People of different backgrounds respond differently to treatments, and chronic neurologic diseases like Parkinson’s and Alzheimer’s progress at varying rates in various groups of people. For these reasons, including minority groups in trials is of importance.
She hopes her study’s findings will help “untangle the roots of social determinants on participation,” and get the clinical community to act. “I want to stop asking the question, ‘Why don’t people of color and underrepresented groups participate in research?’ Instead, I want to say we know why, and we have to make changes as a community,” Adkins-Jackson said.
Clinical research is at the heart of all medical advances. Its goal is to determine whether a device, procedure, or pharmaceutical therapy is effective and safe. Such studies may also assess new ways of using current treatments, measure other aspects of care, or simply record everyday life with a disorder over time.
So far, most Parkinson’s trials have not been adequately representative of everyone who lives with the progressive neurodegenerative disease. Consequently, there is an incomplete knowledge of how Parkinson’s affects patients and their families across backgrounds, ethnicities and races, ages, sexual orientation, and gender. For therapies, particularly new ones, to benefit everyone living with Parkinson’s, research must be more inclusive, Adkins-Jackson said.
In the study, Adkins-Jackson will specifically focus on patients both with and without neurological diseases that include Parkinson’s, Alzheimer’s, and related dementias, and on how disease prognosis (a person’s likely outcomes) affects an individual’s decision regarding trial participation.
Study participants will be asked, among other questions, how they learned of clinical research, the impact participation had on family members, and their degree of trust in research.
MJFF is supporting multiple initiatives with physicians, investigators, and patients to diversify clinical trials. For the last two years, the organization has partnered with CARE and Harvard Medical School on “Fostering Inclusivity in Research Engagement for Underrepresented Populations in Disease (FIRE-UP PD),” a study that is developing culturally significant massaging and materials in four U.S. cities to heighten diversity and inclusion in work into Parkinson’s disease.