Coming from an immigrant family, Daphne Chan, PhD, MHEcon, has seen first-hand how hard our complex healthcare system can be to navigate. Issues of language access, education gaps and assumed medical knowledge create barriers for many, particularly those in the older generation.
“Helping family and friends over the years made me realize how vulnerable being a patient can be (and we are all patients when we are sick), and how important it is for each of us in the vast healthcare system to own up to the responsibility of pursuing health equity,” Dr. Chan said.
Through her 19 years with Johnson & Johnson, Dr. Chan has worked to change the inequities faced by people of color by better informing clinical practice and improving patient care with broad reach and impact.
In her current role as Head of Dermatology Medical Affairs at Johnson & Johnson Innovative Medicine and lead researcher for the Johnson & Johnson VISIBLE study, Dr. Chan and her team’s work includes conducting clinical research in the post-approval setting to generate additional data that addresses clinical unmet needs that might not have been adequately addressed in pivotal development programs, and leveraging clinicians, patient voices and insights to inform the development of new investigational therapies. Dr. Chan and her team also work with medical societies and patient advocacy groups to identify unmet needs and communicate data and evidence that can help improve clinical practice and patient care. Most recently, Dr. Chan and her team’s work on the VISIBLE study was recognized in the inaugural Fierce 50 Health Equity honoree list.
“What I have come to realize is how closely we are connected with patients and providers in our everyday work and what this means in terms of our responsibility as a researcher, corporate citizen, and a healthcare company,” Dr. Chan said. “The challenge is always this: are we looking hard enough to identify relevant issues in our field of work, and can we do something about it to truly make a difference?”
Improving Clinical Trial Diversity for Psoriasis Patients
Dr. Chan is helping to make a difference in diverse patient populations through the Johnson & Johnson VISIBLE study, a first-of-its-kind clinical trial dedicated to the study of psoriasis in people of color with a focus on understanding patient journey, clinical presentation and treatment outcomes. People of color are historically underrepresented in dermatology clinical trials, with psoriasis trials being one of the most severely impacted. Underrepresentation of people of color in the dermatology medical workforce, the lack of diverse patient imageries in medical education and the unique clinical presentation of psoriasis across lighter to darker skin types are a few key factors contributing to barriers for people of color to get a timely diagnosis and to receive optimal care.
“Clinical trials do not, to a large extent, reflect the diverse and complex makeup of the census population and disease epidemiology. The clinical presentation of psoriasis is not the same across skin types and may not be easily recognized in darker skin types. The journey for patients from diverse backgrounds may lead to different treatment outcomes, especially if patients had long-standing uncontrolled disease,” Dr. Chan said. “On top of that, the lack of diverse patient imageries in medical education and the paucity of robust clinical trial data in representative populations can have serious ramifications.”
As a part of the Johnson & Johnson Our Race to Health Equity commitment, the VISIBLE study is one of the many ways the company is working to ensure that the color of one’s skin doesn’t determine their access to care, quality of care or health outcomes. Through the VISIBLE study, Dr. Chan and her team are taking an intentional approach to addressing diversity and underrepresentation in clinical trials by conducting the study in a 100% people-of-color population, partnering with a diverse academic steering committee and investigators who are deeply rooted in their communities, and considering approaches to conduct the study beyond the established norms. This includes providing study investigators and staff with cultural awareness training, offering language and translation support for patients, and using multiple approaches to objectively verify psoriasis diagnosis history in patients to ensure that previous care gaps are not an enrollment barrier. In addition, the team is considering partnership opportunities with medical societies and patient advocacy groups to make the over 20,000 clinical photos across all skin types that will be collected from the two-year study broadly accessible for medical and patient education.
“There is increased awareness of how underrepresentation in the dermatology medical workforce, underrepresentation of diversity in medical education, and underrepresentation of a more diverse population in research studies have collectively contributed to significant gaps in health equity for patients,” said Dr. Chan.
Hope for an Equitable Future
Dr. Chan’s hope for the future of health equity is for everyone to have the ability to seek and receive quality healthcare and achieve quality health outcomes, no matter what their skin color is, what they look like, who they are, and how they identify themselves.
“It will take all key partners in the overall health system to make change,” Dr. Chan said. “And to do this, we start by looking, listening, and taking actions one step at a time.”