Strategies for Moving from Intentions to Actions.
Social justice models can contribute to diversity, equity, and inclusion (DE&I) in clinical trials and across companies, helping to ensure a fair and equitable division of resources, access, and opportunities.
Examples include next-generation protocols building on advances in decentralized trials during the COVID-19 pandemic, efforts by sites to support diversity through staffing, and broader industry efforts to improve inequities of all kinds, at all levels.
Otis Johnson of Clario: “Participant diversity is also a key data quality metric” for clinical trials
“The standard for defining the best possible clinical trials has tended to focus on data quality, with sponsors often preferring to use experienced sites,” says Otis Johnson, PhD, Chief Diversity, Inclusion, and Sustainability Officer for Clario. “Yet, participant diversity is also a key data quality metric and something that can be achieved by including a subset of less experienced sites with access to more diverse patient populations.”
“Sites that have access to diverse populations may lack clinical trials experience, but this challenge can be overcome by providing training,” notes Johnson. “Many people from diverse populations lack trust in the healthcare system based on historical missteps and may be inclined to say no to the opportunity to join a trial. Building trust is helped by having diverse site staffing and site infrastructures to engage with underserved populations. This engagement can help dispel myths about trial participation, including explaining the benefits of fully understanding the study drug’s safety and efficacy across populations, and pointing out that trials are not only a last resort for life-threatening conditions, but also needed for less serious and chronic conditions.”
Staffing and location of sites are key elements in gaining access to underserved minorities, says Johnson. The diversity of site staff is strongly associated with the diversity of clinical trial participants, based on a Tufts Center for the Study of Drug Development study of more than 3,000 sites, half of which were in the United States. Sites with high staff diversity were more likely to be located in urban settings with higher proportions of low income patients and fewer staff. Standard operating procedures on unconscious bias and inclusive behavior were linked to higher staff diversity.
Audrey Cavenecia of Reveles: Diversity has far-reaching implications for our collective wellbeing
“As a matter of global health, the significance of diversity in clinical trials extends beyond moral dimensions, encompassing far-reaching implications for humanity’s collective wellbeing,” says Audrey Cavenecia, Chief Experience Officer for Reveles Clinical Services. “People of color constitute roughly 80% of the world’s population, and overlooking the health needs and genetic diversity of this vast majority could precipitate a health crisis with devastating economic repercussions.”
“While DE&I initiatives have been established, their impact remains limited without enforceable mandates and clear strategic plans to boost participation in clinical trials,” states Cavenecia. “This calls for a modernization of marketing and educational approaches, aimed at fostering a broader and more diverse pool of trial participants. By acknowledging the intrinsic value of diversity and taking concrete steps to ensure its representation, we can make strides toward a healthier and more equitable future for all.”
The Intersection of Diversity, Equity, and Inclusion in Clinical Research: Strategies for Moving from Intentions to Actions
Join this Signature Series panel discussion at ACRP 2023 [April 28 – May 1; Dallas, TX], to deepen your understanding of diversity, equity, and inclusion in clinical research, learn about models making a difference, and enjoy take-home strategies to champion in your organizations and communities. View complete schedule.
Jamie Langley of Parexel: “We need to examine our own implicit biases”
“Our ultimate goal is to improve health, with more diverse representation in clinical trials as an important step toward this goal,” says Jamie Langley, RN, MSN, Executive Director/Global Head of the Parexel Academy with Parexel International.
“Across the healthcare continuum, we need to examine our own implicit biases about who will or will not participate in trials simply based on factors such as race, ethnicity, or gender. We must have the conversations and offer clinical trials as a care option,” says Langley.
“Social determinants of health can impact access to healthcare at both patient and population levels,” notes Langley. “Potential barriers to participation should be identified and addressed equitably through conversations with individuals and not based solely on demographics. This is especially important for the site level team members, such as principal investigators and study coordinators who have direct contact with potential trial participants. Along with raising awareness and breaking down myths around clinical trial participation, anyone who may meet study inclusion criteria should be offered the opportunity to make their own, informed decision – regardless of race, ethnicity, or gender.”
Kristin Smedley of Thriving Blind Academy: “Blindness is not the burden – it’s inaccessibility that’s the burden”
“As part of DE&I, there is a good business case for hiring people with disabilities, who have often developed unique skills in innovation and problem-solving to overcome challenges” said Kristin Smedley, co-founder of the Thriving Blind Academy, whose two sons are legally blind. This private, global community aims to build a thriving mindset and connect with tools and resources to succeed in school, business, and life without sight.
“Blindness is not the burden – it’s inaccessibility that’s the burden,” says Smedley. “Making workplaces more inclusive for people with a disability helps overcome inaccessibility and opens up to a pool of talent to give companies a competitive edge.”
Smedley notes that a disability equality study of 140 companies by Accenture found that organizations that excelled in disability employment and inclusion had 28% higher revenue than other companies, double the net income and 30% higher profit margins over a four-year period. “These companies also gain loyal employees, better retention, and higher levels of creativity. We need to work together to level the playing field.”