How to improve care for disabled patients? We need more suppliers like them

It is common for patients to prefer to be treated by a similar clinician – of the same gender, ethnicity and culture – who can relate to their experiences and develop treatment plans that work better for their lives. To meet these patient preferences and improve the quality of care, a diverse cadre of clinicians and the diversity of the general population is needed. However, with respect to disabled patients, the chances of getting a clinician "like them" are extremely low, which may lead patients to be reluctant to seek treatment or to follow prescribed interventions and treatments. Meanwhile, without adequate scientists with disabilities opening up patient-centered research perspectives, the ability to improve care for disabled patients is limited.

Why is the representation of people with disabilities in the biomedical workforce so limited?

Bonnielin Swenor, Ph.D., M.P.H., professor of ophthalmology at the Johns Hopkins Wilmer Eye Institute and professor of epidemiology at the Johns Hopkins Bloomberg School of Public Health, is working to address this disparity.

Swenor lives with low vision herself and struggles in many aspects of her life, but she spends her time researching how to help patients like her and to badure those patients that there are ways to overcome the difficulties and to achieve their goals. Swenor sees herself more as a patient than as a researcher and uses her unique perspective to formulate patient-centered research questions to provide better care for the visually impaired. She believes that more people with disabilities like her are needed in the biomedical market.

In a new editorial published May 30 in the New England Journal of Medicine, Swenor and Lisa Meeks, badociate professor of medicine at the University of Michigan, tackle barriers to an inclusive workforce and propose a roadmap to guide academic medical institutions towards creating a more inclusive work environment for people with disabilities.

"Although more and more institutions embrace diversity and inclusion, people with disabilities still face barriers to pursuing and getting help in their careers," Swenor said. "We provide employers with recommendations to improve the inclusion of people with disabilities in these environments."

In their article on the NEJM, Swenor and Meeks recommend that academic medical centers include people with disabilities in their diversity efforts, develop centralized ways to pay for any accommodations that may be needed and other actions that may encourage more disabled students to pursue a career in medicine.

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If you would like to discuss with Swenor his editorial on NEJM or his point of view as a disabled patient and employee, contact the Johns Hopkins Medicine Media Team: Jianyi Nie [email protected] or Marin Hedin mhedin2 @ jhmi. edu.