3 Barriers to Diversity in Clinical Trials and How Context-Driven Behavior Change Can Help
The conditions in which people live, play, and work, also known as Social Determinants of Health (SDOH), can impact as much as 50% of the country-level variation in health outcomes. (For comparison, clinical care impacts only 20%)
SDOH can also lead to health disparities; for instance, people without access to transportation or quality care may find themselves unable to treat small issues that eventually snowball into chronic or urgent situations. Long-term structural policies can lay the foundation for a higher quality of life when it comes to improving health outcomes.
A behavior change design approach can support this by homing in on individual actions and behaviors. At each stage of the behavioral design process outlined below, SDOH can help us sequence and prioritize the behaviors, drivers, and interventions that maximize impact.
SDOH-informed behavioral research can help us address several cross-cutting health topics. For example, Mad*Pow is often approached by life sciences companies looking to improve diversity in clinical and challenge trials, particularly among underserved communities. Diversity is crucial as it helps us understand how a treatment might affect people of different races, genders, body types, and other characteristics. Additionally, trials can be the best and sometimes only way to access novel life-saving treatments.
When taking on these challenges, our team collaborates with clients to discover and define the scope of the issue. Research at this phase may include a desktop review and interviews with patients, caregivers, and physicians.
Through research, we have identified these commonly observed barriers to participation in clinical trials:
Lack of clarity around clinical trials: Many patients have little to no understanding of clinical trials and what they entail. Some expressed hesitation about being “guinea pigs” or fear of being mistreated during a trial, echoing concerns rooted in the historical exploitation of diverse communities (e.g., Tuskegee syphilis trials).
Lack of awareness of where to start: There’s a general confusion about who (patient or physician) initiates a patient’s participation in a clinical trial. Physicians tend to be the gatekeepers for clinical trial information. If they don’t bring up a trial as an option, patients generally assume they are ineligible and thus don’t inquire.
Perception of trials being last-resort or low quality: Some patients perceive being part of a clinical trial means receiving less or no care (placebo effect). In other words, patients mistakenly believe that they will receive a lower standard of care even if they are not part of the experimental group.
Based on our experience, here are three simple design solutions life sciences companies can implement to support more inclusive and diverse clinical trials:
Improve the content and findability of the clinical trial website: A streamlined website with easy-to-understand copy helps patients gain a basic understanding of clinical trials. In addition, the ability to quickly sort and find the necessary information on the website boosts SEO and informs decision-making.
Develop interactive guides on clinical trials: An interactive and personalized guide can help patients properly vet whether a clinical trial is right for them and help them broach and frame the discussion with their physicians.
Build visibility through other initiatives: By sponsoring public events and supporting local businesses in underrepresented communities, life sciences companies will familiarize the public with their brands in a low-stress setting, sparking conversations about clinical trials and slowly building the funnel toward more active participation.
Designing long-term solutions will require continual refinement and iteration, but it’s worth it. In the long run, promoting diversity in clinical trials will ensure higher-quality findings, treatments, and health and well-being for everyone.
Interested in learning more about how Mad*Pow can collaborate with you to tackle complex problems? Start the conversation by contacting Mad*Pow's Health Practice Lead,Tiffany Mura.
 Centers for Disease Control and Prevention. (2021, April 22). The US Public Health Service Syphilis Study at Tuskegee. Centers for Disease Control and Prevention. Retrieved October 25, 2022, from https://www.cdc.gov/tuskegee/index.html
The annual HXD conference provides a unique crossroads for a diverse community of creators, practitioners, researchers, and developers, to help accelerate the transformation of our health system. Attracting over 500 visionaries across the health ecosystem, this event is created to drive real world change. Check out videos from the 2021 event including CNN's Chief Medical Correspondent, Dr. Sanjay Gupta's keynote "The State of Health."
The Center for Health Experience Design (CHXD) is a community that is designed to foster connection across the health ecosystem. It is only by working together that we can solve the toughest health challenges.
Our annual FXD conference provides a unique learning and networking opportunity to move your organization forward to confront new challenges. A gathering of executives, experts, visionaries, and progressive thinkers across Insurance, Banking, Wealth Management and Fintech gather for this one-and-a-half day of inspiring presentations, workshops and discussion that will help drive real world change.
The Designer’s Oath is a tool that helps multidisciplinary teams define the ethical guidelines of their engagements. Designers are responsible for creating more than ever before and with this increased influence, we must take a step back and recognize the responsibility we have to those we design for.