Clinical research refers to the systematic investigation of medical interventions, treatments, procedures, and pharmaceuticals on human subjects to advance our understanding of health and medical science. This includes research not only on patients but also on care partners, who play a crucial role in the healthcare journey. Clinical research plays a pivotal role in shaping medical practices, influencing treatment protocols, and expanding our knowledge of diseases and their management. Through clinical research, scientists and medical professionals aim to develop new therapies, assess the safety and efficacy of interventions, and improve existing medical practices.
The importance of clinical research lies in its capacity to drive medical progress and enhance the quality of life of patients and care partners. Through rigorous scientific inquiry and empirical evidence, clinical research generates insights that shape medical practices, inform treatment decisions, and advance our understanding of diseases. It paves the way for the discovery and development of novel therapies, diagnostic tools, and preventive strategies, ultimately leading to improved health outcomes and enhanced quality of life for individuals across the globe. By participating in clinical research, individuals not only contribute to the betterment of healthcare but also play an active role in shaping the future of medicine for generations to come by bettering diversity.
A Clinical Trial assesses the impact of interventions (medications, medical devices, surgical procedures, dietary regimens, behavioral techniques, and lifestyle adjustments) on biomedical or behavioral outcomes relevant to health.
Establish the safety and effectiveness of a novel intervention
Investigate methods for early disease detection
Assess enhancements to patients' quality of life
Historically marginalized communities are significantly underrepresented in PD research. A study surveyed all PD clinical trials from 1985 to 2007 in United States, and only 17% of these trials reported the racial and ethnic makeup of participants. Of those reporting race and ethnicity of participants, only 6% were non-white with 1.7% identifying as African American and 1.3% as Hispanic/Latinx.
The Revitalization Act of 1993 federally funded clinical trials to include sufficient numbers of women and minority participants. Despite this, a lack of diversity in clinical research continues. There are many barriers that lead to a lack of diversity in PD research. Many of these barriers relate to limited access to healthcare services more broadly and they are often a result of historical and systemic inequities and discrimination.
Recruitment practices have disproportionately affected certain groups due to:
- Financial burdens of participation and frequent in-person visits
- Recruiting in only academic medical centers
- Overly complex protocols and stringency of eligibility criteria
- Catering only to those who experience fewer cultural barriers
- Valid feelings of mistrust
In all randomized clinical trials published in JAMA, The Lancet, and The New England Journal of Medicine in 2015 and 2019, only half reported race and less than 15% reported socioeconomic status.
- Limited representation of racial minority groups
- White individuals were vast majority of study participants even with growing focus on promoting inclusion in medicine and research (84% in 2015 and 77% in 2019)
(Click to read study)
One of the first obstacles for minority groups, early diagnosis for Parkinson's is the most important step for successful treatment. Due to the lack of information and support, it is harder for non-white demographics to identify early signs of Parkinson's leading to diagnosis.
- African Americans and Chinese Americans interpret PD symptoms as normal aging more often as compared to their white counterparts, which has a direct effect on both missed and delayed diagnoses.
Click to read study
- Unequal distribution of hospitals, clinics, and treatment centers is another obstacle to seeking access for diagnosis and early detection
- Historical racial bias sometimes leads to underdiagnoses or delays in diagnosis among particular communities
Specialized care can better help manage symptoms and reduce future complications. It is rare for patients who don't have the right resources or connections mainly due to:
- Lack of transportation and placement in distant locations
- Cost of care
- Lack of providers who are culturally sensitive or trained in cultural competency
Historically, non-white patients, especially African American patients, have been significantly less likely to receive major therapeutic procedures. (Click to read study)
The need for more personalized clinical courses based on:
- How Parkinson's progresses in different populations
- Evaluation of assessment procedures across different cultures and responses to treatment
In short, dealing with Parkinson's disease (PD) faces big problems in finding people for studies, diagnosing the illness early, and providing proper care. Clinical trial recruitment practices, marked by demanding protocols and limited diversity, hinder the development of inclusive and effective treatments. Diagnosis, especially in minority communities, faces obstacles due to cultural differences in symptom interpretation and unequal access to healthcare resources. Disparities persist in care and treatment, with specialized care being a privilege for those with adequate resources, while historical biases result in fewer major therapeutic procedures for non-white patients.
To fix this, we need personalized plans that think about how PD affects different groups, check assessment methods for all cultures, and train healthcare providers to understand and respect diverse backgrounds.
