Addressing Health Equity, Diversity, and Inclusion in the Bleeding Disorders Community: Insights From a Pilot Study of Multi-Stakeholder Interviews and Survey Data.

INTRODUCTION

Social determinants of health (SDOH) increasingly shape health care priorities, highlighting the intricate interplay of environment, behaviour, socioeconomics and health care access. The COVID-19 pandemic intensified disparities, particularly affecting racial/ethnic groups with bleeding disorders.

AIM: The pilot study aimed to identify key themes related to health equity, diversity, and inclusion as it relates to Black, indigenous people of colour (for example, Native Americans and Asian Pacific Islanders), and Hispanic/Latino people with bleeding disorders (PWBD) by interviewing haemophilia treatment centre (HTC) healthcare providers (HCPs) and a National Bleeding Disorders Foundation (NBDF) chapter executive director. It sought to identify practice gaps, understand the impact of SDOH, and provide an opportunity to propose interventions to address these disparities.

METHODS

NBDF conducted eight interviews with HTC staff members and an NBDF chapter executive director to explore the impact of bleeding disorders on underserved groups. Themes included barriers to care, SDOH influences, and potential interventions. A total of 33 HTC HCPs responded to an anonymous quantitative survey fielded electronically to further validate insights and gather quantitative data.

RESULTS

Specialists highlighted pandemic-related challenges, including exacerbated mental health concerns, communication barriers due to language, and transportation issues. These findings underscore the significant impact of SDOH on health care access and outcomes amongst underserved PWBD.

CONCLUSION

The pilot study highlights the need to address access and health care disparities amongst underserved PWBD, particularly in racial/ethnic minorities. By addressing SDOH factors, cultural context, and healthcare professionals' bias, HTCs can strive towards equality, equity, and justice, facilitating optimal outcomes for all individuals with bleeding disorders.