On February 23, 2022, the National Organization for Rare Disorders (NORD) held a webinar titled “Advancing Equity in Rare Healthcare.” The program was organized in collaboration with the Rare Disease Diversity Coalition. The webinar was focused on the role that health systems and healthcare providers need to play in order to promote diversity, equity, and inclusion for rare disease patients.
The webinar was moderated by LaTonya Washington, MD, VP, and CMO at Methodist North Hospital, and President at Bluff City Medical Society. Other speakers included:
- David Acosta, MD, Chief Diversity & Inclusion Officer at the American Association of Medical Colleges
- Kirk Campbell, MD, Professor of Medicine, Vice Chair, Equity & Inclusion and Director of the Nephrology Fellowship Program, Icahan School of Medicine, Mt. Sinai
- Debra Regier, MD, Medical Director, Rare Disease Institute, Children’s National Hospital
LaTonya introduced the program and made the important point of emphasizing inclusivity not merely for its own sake, but because research has consistently shown the diverse, inclusive organizations perform better than those that don’t embrace exclusivity.
Dr. Campbell fervently agreed with this. He also noted the impacts of barriers to care, which can cause some patients to need more resources and time in order for equitable outcomes to be achieving in the clinical context. Understanding barriers to care is critical and needs to be a component of education for medical professionals. Dr. Campbell also highlighted the need for new approaches in development and research. After all, people of different backgrounds may not respond to a medicine in the same way. Scientifically accurate and objective research inquiry requires diversity and inclusion by default.
Dr. Acosta notes that women have made up the majority of med school applicants in recent years, as well as the majority of accepted applicants. Numbers of racially diverse applicants have also been increasing. However, the percentages still do not reflect population demographics. He suggests that medical schools should increase their ethnically diverse faculty in order to provide role models for potential students. He also cites the need for improved admissions policies and pathway programs that emphasize the potential capabilities of students instead of heavily scrutinizing their weaknesses. Dr. Acosta invokes the phrase “presumed incompetence,” which is believes is the result of racial bias.
At this juncture, Dr. Acosta says that most schools are providing instruction about the impacts of medical racism and discrimination.
Dr. Regier emphasized the importance of cultural humility during the webinar. She asked the audience to consider what cultural humility might to look like, as well as its relationship to implicit bias.
How do we ensure that physicians are culturally sensitive with patients that may be culturally different than them?
Regier also mentions the impact of dysmorphic rare conditions, which can alter someone’s appearance; but in medical textbooks, most images feature white women, which greatly limits their educational value. This can lead to treatment delays since many doctors may not know what a condition looks like in people of other backgrounds.
Acosta emphasizes the importance of really listening to patients, which can reveal some beliefs or fears they may have about the medical system. This can be important for recognizing barriers to successful outcomes.
Campbell cites barriers such as mistrust, lack of availability, inability to travel, and lack of awareness. This is especially important for clinical trials; many patients may not be aware of what trials are supposed to do.
Overall, success in this area requires self-reflection. An inequitable environment simply isn’t healthy for the recovery of patients. Evaluating the workplace itself can be important. Everyday systemic discrimination can be very subtle and easily overlooked by people that aren’t affected by it.
