A Patient Perspective on Actionable Steps to Address Disparities in Healthcare Among US Patients with Multiple Myeloma

BACKGROUND

Multiple myeloma (MM) disproportionally affects non-Hispanic Black adults, with a >2-fold higher incidence vs White people. Black patients (pts) have poorer clinical outcomes, thought to result from treatment (Tx) disparities caused by access barriers (eg, lower economic status, inadequate health insurance, geographic location), structural barriers (eg, bias and cultural insensitivity among healthcare providers [HCPs]), and a historic mistrust of HCPs and the medical system. To provide a pt perspective, MM Health Equity Summits were organized. Actionable steps for US HCPs, policy makers, and other stakeholders were proposed to address inequities.

METHODS

Two MM Health Equity Summits with pts, pt advocates, HCPs, and industry sponsors were held. Using a strategic framework, topics relevant to the pt experience were identified at the first summit (Dec 2022) and 2 topics were selected for further discussion at the follow-up summit (Sep 2023 in Dallas, Texas). This initiative was pt led, with involvement from relevant experts throughout. Pts with MM led a series of meetings with an expanding set of stakeholders, all with unique perspectives, experiences, and ways of supporting underserved pt populations. Those discussions led to the insights presented here.

RESULTS

In Dallas, the first topic centered on delivering precise information specific to a pt’s stage of journey and included awareness (strengthening the information delivery network) and understanding (re-curating the information provided). Lack of awareness of MM and its symptoms among HCPs and pts was identified as the primary cause for delayed diagnoses, along with a gap in payer education/access. Participants suggested that enhancing HCP MM trainings and resources could help with timely diagnoses, while payers should be made aware of required diagnostic tests. Increasing accessibility and utilization of support groups (SGs) and community health workers (CHWs) will help educate pts about MM and promote self-advocacy.

Participants described how HCP cultural biases often led to a less thorough diagnostic workup and explanation of all Tx options, including clinical trials, for Black pts. They described a skewed perception of authority between pts and HCPs, where pts may feel intimidated by HCP engagement. Self-advocacy could be improved by enhancing pt education through SGs and CHWs, giving pts tools needed to initiate conversations and ask for appropriate information. Participants agreed that cultural humility and competency training for HCPs may reduce cultural bias and facilitate bidirectional communication, which is necessary for HCPs to fully support their pt’s goals, as they first need to understand their pt’s circumstances and social needs.

A lack of health literacy among pts negatively impacts comprehension of MM, with additional educational and emotional support needed for pts. Participants suggested pts should be encouraged to join SGs, and that comprehensive diagnosis and Tx information should be offered in a pt’s native language and in easy-to-digest pieces to maximize understanding, utilization and retention of key content.

The second topic focused on improving access to optimal care. Participants noted that sufficient access is constrained by the limited number of specialist providers, particularly diverse providers. They discussed how geographic, cultural, and financial circumstances impact access to specialist care. Proposed solutions included using telehealth, reducing HCP biases in referrals, and using pt navigators to aid with healthcare system obstacles. Long term solutions included facilitating a pipeline of diverse providers, both specialists and other HCPs, as the lack of diversity often means that pts do not communicate openly with their HCPs due to mistrust. Participants indicated that promoting racial concordance between the pt and care teams could also improve negative perceptions around clinical trials.

CONCLUSIONS

The MM Health Equity Summits provided an opportunity for pts and pt advocates to discuss their experiences and barriers when trying to access equitable Tx. Access is affected by race, socioeconomic determinants, and perceptions of the healthcare system. Actionable steps were recommended for HCPs and policymakers to improve Tx of disadvantaged pts and to redress historic inequities, focusing on solutions to expand awareness, understanding, and access to care.