There are widespread, longstanding, systemic, and well-documented preventable health disparities among racial and ethnic minorities and amongst those in LGBTQIA+ communities. Minority populations experience a multiplicity of burden in regard to their health including poorer overall health statuses, worse outcomes, and disproportionate diagnosis of health conditions due to the intersection of structural inequity.
Barriers to access, differences in clinical need, and differences in patient treatment exacerbate these poorer health outcomes. Given this unfair burden, healthcare stakeholders have an ethical obligation to change healthcare delivery to address health inequity.
The Council of Medical Specialty Society (CMSS) provides a forum to catalyze healthcare improvements across U.S. medical specialty societies. They held the CMSS Leadership Summit on Equity and Antiracism in April 2021 to focus on methods to reduce health disparities, address issues perpetuated through dominant culture dynamics, and improve equity within medical specialties. Key objectives included:
In this post, we share key learnings from the summit and expand on the role of clinical registries in this imperative work.
The initial step to increasing awareness around inequity and the role of bias in health disparities is acknowledging the extent to which these systematic processes harm health outcomes.
These processes permeate healthcare at every level: from the language we use to talk about racism and bias, to algorithms built on racist data that are used to perpetuate myths about genetic and physiologic differences between patients of different races , to the exclusion of minorities in medical schools, to the lack of provider diversity, and ultimately in patient care.
This work begins with the way we speak about bias in general, and racism specifically. The language used to describe processes that exclude people who do not conform to dominant sociocultural norms indemnifies the very groups that perpetuate these processes.  This camouflages how detrimental bias is to both wealth-building and health outcomes. In changing how we talk about persons that do not hold power and influence in society, firstly we recognize that there is a difference in treatment based on power dynamics and we open the door to changing that dynamic.
Increasing awareness must be a systematic process occurring at every level of healthcare. This begins with recognizing race as a social construct that has physical implications  and treating social data with the same gravity as traditional medical data and enacting policy to support the collection and bidirectional transfer of these data. It also includes creating psychologically safe environments that encourage allyship amongst clinicians of dominant sociocultural groups and marginalized people. 
To dismantle racism and bias within healthcare, we must prioritize diverse perspectives amongst clinicians and the healthcare delivery system as a whole and normalize diversity, equity and inclusion initiatives.  To increase awareness surrounding health inequity, we are educating and training our team, focusing on ways to integrate the use of social data in registries, and supporting our clients in doing the same. We are also developing partnerships with and learning from experts who can help accelerate our work in measuring and improving health equity so that we can in turn support organizations like CMSS.
Advancing health equity work in the pursuit of reducing and eliminating health disparities involves detection and measurement in addition to understanding the determinants. Clinical data registries can be instrumental in these tasks by assessing the causes and impact of health disparities on patient outcomes.
According to the Centers for Disease Control and Prevention (CDC), only 10 percent of factors affecting premature death are related to clinical care, and 30 percent of factors relate to genetics. This means that 60 percent of factors impacting premature death are based on a combination of social/environmental factors (20 percent) and behavior (40 percent). Ensuring the delivery of high-quality, patient-centered care requires understanding both the needs and circumstances of the populations served. Registries can collect and analyze patient, clinical, social, and geographic data to provide a more complete view of the type of advantages or disadvantages certain patients have in attempting to achieve optimal health. 
Fully identifying and measuring disparities and their root causes necessitates data that goes beyond clinical data elements. This includes the prioritization and comprehensive collection of social data such as:
Integrating comprehensive social data elements in the United States Core Data for Interoperability (USCDI) and enforcing mandatory collection within electronic health records (EHRs) are two steps that make up a meaningful process in measuring the extent and impact of social determinants of health.
Data and measurement are only as valuable as it is usable and actionable. Advancing health equity begins with understanding the sources of disparities, but it can only be achieved through effective action.
Once disparities are assessed and the causes are understood, impactful interventions can be developed using data-driven approaches.
However, implementing informed interventions is only the first step. Next, interventions must be evaluated for effectiveness, changed to address problems as necessary, and finally, best practices must be disseminated to scale.
To promote optimal patient care, it is our ethical obligation to understand the prevalence and severity of social and health inequities, utilize comprehensive data collection and analysis, and take informed action to end them. We must evaluate and implement interventions that effectively improve outcomes for the most vulnerable populations, which in turn improves conditions for all populations.
Clinical data registries are valuable tools for pursuing these efforts. Registries can collect a high-volume of data from different sources and deliver high-quality, data-driven insights. Reduction and eventually elimination of health disparities require data to detect and measure impact, identify the complex and interconnected determinants, and inform interventions and best practices.
We’re interested in hearing how your organization is addressing these important issues and what challenges or questions you are finding. If you have insights to share or questions to ask, reach out to me at firstname.lastname@example.org.
I'd like to thank my colleague, Bradley Moore, M.P.H., Director, Registry Solutions, for his significant contributions to this post.
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