Dear Editor:
We applaud the authors for addressing the critically important issue of delivering antiracist care to Black Americans.1 They identify and discuss six major factors that contribute to the lack of equitable delivery of palliative care (PC) and provide four tips, strategies for ensuring antiracist PC delivery. However, perhaps inadvertently, the authors have not included another essential tip, that of partnering with communities in the form of community-based participatory research (CBPR). CBPR is the fundamental social justice approach in developing PC programs that, in the authors' words, “…integrate perspectives of individuals, patients, and caregivers with lived experiences of racism in designing antiracist clinical care and policies.”
CBPR engages the community as an equal partner and is critical to determining community-specific PC needs, values, preferences, and priorities. It is also an evidence-based approach proven to reduce health disparities across a wide range of illnesses, for which systemic racism is usually a significant contributing factor.2,3
CBPR approaches have not been traditionally implemented in PC, and a recent article called on our field to utilize CBPR approaches to promote equitable outcomes.4 Over the past five years, Elk's team has used CBPR principles to create the first culturally concordant PC intervention for African Americans and Whites with serious illness living in the rural southern United States.5 In addition, the team has also developed a video training program for PC clinicians based on the African American community's recommendations. This training program was developed to provide culturally appropriate and antiracist care to older African Americans with serious illness.5 In both studies, the community recommended specific action steps for providing antiracist care salient to PC clinicians with ongoing partnership when refining training protocol and guidelines.
To develop policy that promotes equitable care, gathering community perspectives should be an initial step, not an afterthought. Black voices must be central to this process and Black communities should serve as experts, not simply research subjects.
Again, we applaud the thoughtfulness of the article. However, it is critical we recognize that CBPR approaches to PC program development and implementation result in community-centered and racist-free evidence-based strategies that enhance the delivery of equitable and just PC for all.
Funding Information
Dr. Elk is funded by NIH (NINR #R01NR017181); Dr. Gazaway is funded by NIH (NINR# 3R01NR017181-03S1).
References
- 1. Fitzgerald Jones K, Laury E, Sanders JJet al. : Top ten tips palliative care clinicians should know about delivering antiracist care to Black Americans. J Palliat Med [Epub ahead of print; DOI: 10.1089/jpm.2021.0502]. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2. Belone L, Lucero JE, Duran B, et al. : Community-based participatory research conceptual model: Community partner consultation and face validity. Qual Health Res 2016;26:117–135. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3. Wang-Letzkus MF, Washington G, Calvillo ER, Anderson NLR: Using culturally competent community-based participatory research with older diabetic Chinese Americans: lessons learned. J Transcult Nurs 2012;23:255–261. [DOI] [PubMed] [Google Scholar]
- 4. Mills J, Abel J, Kellehear A, Patel M: Access to palliative care: The primacy of public health partnerships and community participation. Lancet Public Health 2021;6:e791–e792. [DOI] [PubMed] [Google Scholar]
- 5. Elk R, Gazaway S: Engaging social justice methods to create palliative care programs that reflect the cultural values of African American patients with serious illness and their families: A path towards health equity. J Law Med Ethics 2021;49:222–230. [DOI] [PubMed] [Google Scholar]