On October 27, 2021, the National Organization for Rare Disorders (NORD) hosted an informational webinar titled “Navigating Diversity, Equity, and Inclusion (DEI) in Rare Disease Non-Profits.” This webinar was the first in a series of three webinars that will focus on diversity, equity, and inclusion. Click here to watch a recording of the program.
Speakers in this webinar included:
- Yolanda Avent, PhD., Founder and CEO, Avent Diversity Consulting, LLC
- Keri Norris, PhD., MPH, MCHES, VP of Health Equity, Diversity, and Inclusion, National Hemophilia Foundation
- Vinicio de Jesus Perez, MD, FCCP, FAHA, ATSF, Associate Professor of Medicine, Stanford University Medical Center
This webinar was moderated by Debbie Drell, Director of Membership, NORD.
Dr. Avent kicked off the webinar by going over several basic concepts surrounding diversity, equity, and inclusion and touched upon one of the most important related concepts: implicit bias.
Implicit bias tells us that all people are subject to inherent biases that they often are not aware of; such biases can impact the way we perceive other people and our surroundings. She describes four different types of implicit bias that can have impacts on how we treat others, such as:
- Affinity: A connection to people that are more like us.
- Perception: Stereotypes and assumptions towards people that are more different.
- Halo: Projecting positive qualities on someone even though we don’t know them.
- Confirmation: Biased towards info that concerns our own beliefs and ideas.
Dr. Avent also discussed one of the most widespread methods in which bias and discrimination emerge in the modern day: microaggressions.
Microaggressions are brief, common indignities that communicate hostility. These may be conscious or unconscious.
Dr. Norris talked about how the NHF has begun to take steps towards incorporating principles of diversity, equity, and inclusion into its activities. Efforts include transparency, chapter training, community engagement/training, inclusive language guides, DEI guidelines, values statement, and integration into education and outreach.
“Meeting people where they are to ensure optimal health is achievable for all groups and races.” – Dr. Keri Norris
Systemic barriers that are linked to social determinants of health include socioeconomic factors (40%), physical environment (10%), health behaviors (30%), and healthcare (20%).
Social determinants include access to health services, childhood experiences, social support, education, housing, family income, communities, and employment status. Dr. Norris says that it is important for organizations to begin by acknowledging institutional influences on health equity.
“Evaluate the demographic of your community. Who is missing from the community? Reflect on the internal processes of the organization.”
- Acknowledge in public if you have ever not been fair or intentional with your engagement. Recognize if a certain group was missing from the table.
- Be able to tap into key stakeholders, such as leaders that the community trusts and respects. Successful engagement with the leaders will encourage the community you are trying to reach to trust your intentions.
- Make sure you have cultural awareness, sensitivity, and humility.
Dr. Perez is a physician that has dedicated his practice to the treatment of rare lung conditions such as idiopathic pulmonary fibrosis and pulmonary hypertension. He has a lot of experience treating patients that belong to marginalized communities, including Latino and undocumented patients. Dr. Perez reported on a patient he saw who had been struggling in the system for three years.
During this time, the patient was misdiagnosed and even faced neglect from doctors. This patient was low-income, undocumented, and uninsured. Dr. Perez noted that years of poor treatment had eroded the patient’s trust in the system, which is a critical bedrock for getting effective treatment.
Patients that have trouble speaking English are more vulnerable due to the complexities of the system. This requires physicians themselves to work as advocates. A team of committed individuals is critical for success. With multiple barriers, an intersectional approach is necessary, as is an understanding of the patient’s values.
It’s important for patients to understand their own base of support. The physicians and care team must be part of it, but they can’t be everything. The family or other outside support system has to play a role too. In the example of this patient that was undiagnosed, education was vital.
A big question raised by Dr. Perez was this:
How can people of color be reached after past bad experiences or mistrust of the health system?
These are considerations that rare disease nonprofits need to know about as they increase their efforts to support rare disease patients of color.
