“Patient-Centered” Clinical Research Is the Way Forward
Education & Research Greater diversity in trial volunteers will lead to better outcomes, and more customized care.
The STARR Coalition is a nonprofit organization working to bring together thought-leaders within clinical research, pharma and advocacy. By creating a neutral playing field, leaders throughout the industry and advocacy are able to find solutions to complex issues hindering the progress of cutting-edge research, especially in the area of central nervous system disorders. Diversity in research was one of the first topics brought forth by the stakeholders.
A new approach
A growing movement is building around “patient-centered” clinical research. Patient-centered clinical research broadens the conversation to not only include sponsors and contract research organizations, but also involves the volunteer into every aspect of the trial design. Volunteers become informed collaborators whose investment into a trial goes beyond mere participation — they become team members working toward the overall success of the trial. This type of process requires the design to incorporate many aspects of the volunteer; ethnicity, race, socioeconomic status, gender, exceptionalities, language, religion, sexual orientation, age and geographical area, just to name a few. By embracing diversity in the trial framework, we open participation to individuals from a broad cross-section of our society — ultimately benefiting outcomes.
Recognizing diversity is vital to furthering research and treatment, and is the key to finding cures for diseases.
Clinical research trials are rooted in the communities they serve. Effective community outreach, community education and enrollment of research volunteers hinges on the engagement of diverse communities. The STARR Coalition members have identified cultural dynamics as a top priority. So while a person may self-identify with a specific race, within that race population their cultural identity can vary greatly based on a wide range of factors including: customs, language, family dynamics, peer bias, geographical roots, religious practices and many other subtilties. We are working with stakeholders from across the industry to create a framework to that allows us to plug into any community, in hopes of creating a greater degree of trust in clinical research.
Unfortunately, many medical indications are plagued by stigma. Central nervous system disorders, for example, offers unique challenges. When it comes to mental illnesses, it takes an average of 10 years after first symptoms of a mental disorder appear for someone a person to seek treatment. Stigma may be an undercurrent of cultural bias. Recognizing diversity is vital to furthering research and treatment, and is the key to finding cures for diseases.
The STARR Coalition is made up of people like you. We rely on our stakeholders like Evolution Research Group and others to drive progressive conversations. To learn more visit www.thestarr.org.