Antiracism and Community-Based Participatory Research: Synergies, Challenges, and Opportunities.

Structural racism causes stark health inequities and operates at every level of society, including the academic and governmental entities that support health research and practice. We argue that health research institutions must invest in research that actively disrupts racial hierarchies, with leadership from racially marginalized communities and scholars. We highlight synergies between antiracist principles and community-based participatory research (CBPR), examine the potential for CBPR to promote antiracist research and praxis, illustrate structural barriers to antiracist CBPR praxis, and offer examples of CBPR actions taken to disrupt structural racism. We make recommendations for the next generation of antiracist CBPR, including modify health research funding to center the priorities of racially marginalized communities, support sustained commitments and accountability to those communities by funders and research institutions, distribute research funds equitably across community and academic institutions, amplify antiracist praxis through translation of research to policy, and adopt institutional practices that support reflection and adaptation of CBPR to align with emergent community priorities and antiracist practices. A critical application of CBPR principles offers pathways to transforming institutional practices that reproduce and reinforce racial inequities. (Am J Public Health. 2023;113(1):70-78. https://doi.org/10.2105/AJPH.2022.307114).

Paper-based microchip electrophoresis for point-of-care hemoglobin testing.

Nearly 7% of the world's population live with a hemoglobin variant. Hemoglobins S, C, and E are the most common and significant hemoglobin variants worldwide. Sickle cell disease, caused by hemoglobin S, is highly prevalent in sub-Saharan Africa and in tribal populations of Central India. Hemoglobin C is common in West Africa, and hemoglobin E is common in Southeast Asia. Screening for significant hemoglobin disorders is not currently feasible in many low-income countries with the high disease burden. Lack of early diagnosis leads to preventable high morbidity and mortality in children born with hemoglobin variants in low-resource settings. Here, we describe HemeChip, the first miniaturized, paper-based, microchip electrophoresis platform for identifying the most common hemoglobin variants easily and affordably at the point-of-care in low-resource settings. HemeChip test works with a drop of blood. HemeChip system guides the user step-by-step through the test procedure with animated on-screen instructions. Hemoglobin identification and quantification is automatically performed, and hemoglobin types and percentages are displayed in an easily understandable, objective way. We show the feasibility and high accuracy of HemeChip via testing 768 subjects by clinical sites in the United States, Central India, sub-Saharan Africa, and Southeast Asia. Validation studies include hemoglobin E testing in Bangkok, Thailand, and hemoglobin S testing in Chhattisgarh, India, and in Kano, Nigeria, where the sickle cell disease burden is the highest in the world. Tests were performed by local users, including healthcare workers and clinical laboratory personnel. Study design, methods, and results are presented according to the Standards for Reporting Diagnostic Accuracy (STARD). HemeChip correctly identified all subjects with hemoglobin S, C, and E variants with 100% sensitivity, and displayed an overall diagnostic accuracy of 98.4% in comparison to reference standard methods. HemeChip is a versatile, mass-producible microchip electrophoresis platform that addresses a major unmet need of decentralized hemoglobin analysis in resource-limited settings.

Implementation of the NCAA Sickle Cell Trait Screening Policy: A Survey of Athletic Staff and Student-athletes.

OBJECTIVE: To describe the perspectives and experiences of athletic trainers, coaches, and student-athletes approximately three years post-implementation of the NCAA sickle cell trait (SCT) screening policy. PARTICIPANTS: Two-hundred and eight student-athletes, 32 athletic trainers, and 43 coaches from 10 NCAA Division I (DI) institutions in North Carolina from January to June 2014. METHODS: Two online surveys were used to assess knowledge, perspectives, and experiences. RESULTS: Athletic staff were more supportive than student-athletes of the need for the policy. Noted challenges included variation in implementation and follow-up for SCT-positive athletes, financial costs to institutions and athletes, and timing of the screening. CONCLUSIONS: More education about SCT is needed for student-athletes and athletic staff in order to help make the implementation more successful. All parties need to be in agreement regarding the importance of knowing which student-athletes have SCT and how that information will be utilized.

Perspectives and Practices of Athletic Trainers and Team Physicians Implementing the 2010 NCAA Sickle Cell Trait Screening Policy.

Sickle cell trait (SCT) is usually benign. However, there are some conditions that may lead to SCT-related problems and put athletes with the trait at particular risk. In 2010 the National Collegiate Athletic Association (NCAA) issued a policy that required all Division I (DI) student-athletes to confirm their SCT status or sign a liability waiver to opt out of testing. Athletic trainers and team physicians play key roles in the policy implementation and we examined their perceptions and practices. Between December 2013 and March 2014 we interviewed 13 head athletic trainers and team physicians at NCAA Division I colleges and universities in North Carolina. We used an interview guide with open-ended questions covering knowledge of SCT, historical screening and education practices, current implementation, and policy benefits and challenges. Participants were knowledgeable about SCT and thought the policy was beneficial in providing SCT health information to and for student-athletes. Schools varied in provision of genetic counseling, offering the waiver, SCT tests administered, and other aspects. Challenges included: insufficient guidance from the NCAA; financial considerations; and misunderstanding of the relationships of race and ancestry to SCT risk. Athletic staff found the policy valuable, but felt it needs clarity and standardization.

State-based surveillance for selected hemoglobinopathies.

PURPOSE: The lack of an ongoing surveillance system for hemoglobinopathies in the United States impedes the ability of public health organizations to identify individuals with these conditions, monitor their health-care utilization and clinical outcomes, and understand the effect these conditions have on the health-care system. This article describes the results of a pilot program that supported the development of the infrastructure and data collection methods for a state-based surveillance system for selected hemoglobinopathies. METHODS: The system was designed to identify and gather information on all people living with a hemoglobinopathy diagnosis (sickle cell diseases or thalassemias) in the participating states during 2004-2008. Novel, three-level case definitions were developed, and multiple data sets were used to collect information. RESULTS: In total, 31,144 individuals who had a hemoglobinopathy diagnosis during the study period were identified in California; 39,633 in Florida; 20,815 in Georgia; 12,680 in Michigan; 34,853 in New York, and 8,696 in North Carolina. CONCLUSION: This approach provides a possible model for the development of state-based hemoglobinopathy surveillance systems.

Use of the Word "Crisis" in Sickle Cell Disease: The Language of Sickle Cell.

Language matters. The words used to name and describe disease phenomena are a reflection of society. The authors address the use of the word "crisis" in SCD from sociological, historical, medical, and patient perspectives. The term "crisis" became associated with sickle cell disease in the mid-1920s, more than a decade after the first description of the disease had been published. The term had been used for centuries in conjunction with fever and as a signifier of severe pain in certain diseases during the nineteenth century. The application of the term to this new disease in the 1920s resulted from physicians' observations of their patients' urgent situations. Though commonly used by health care providers and patients today, "crisis" may not be the appropriate term for sickle cell patients suffering severe pain, because people endure differing amounts of pain before stating they are "in crisis." The result can be undertreatment of the pain or mistrust between physicians and patients about use of strong (narcotic) pain-relievers. Some patients believe the term is useful in communicating the severity of their pain and the urgency of their need for relief from it, especially when seeking care at hospital emergency departments, while others believe "crisis" does not accurately reflect the severity or seriousness of their situation.

Racism is an ethical issue for healthcare artificial intelligence.

There is growing attention and evidence that healthcare AI is vulnerable to racial bias. Despite the renewed attention to racism in the United States, racism is often disconnected from the literature on ethical AI. Addressing racism as an ethical issue will facilitate the development of trustworthy and responsible healthcare AI.

"Resilience?" perspectives from adults living with sickle cell disease.

OBJECTIVES: This study examines and explores the definition of resilience in adults living with sickle cell disease (SCD) in the United States (U.S.). METHODS: Participants were recruited between 2014 and 2018, from across the U.S. as part of Insights into Microbiome and Environmental Contributions to Sickle Cell Disease and Leg Ulcers Study (INSIGHTS). Inclusion criteria included age of 18+, a diagnosis of SCD, and completion of the Brief Resilience Scale (BRS). Thirty participants were randomly selected, 15 each from the lowest and highest BRS quartile. A semi-structured qualitative interview was administered. All participants identified as Black with an average age of 42.5 (13 F, 17 M). RESULTS: Three main concepts emerged in response to the question "How do you define resilience?" (a) not giving up (b) how one deals with challenges and (c) moving forward. CONCLUSION: This study suggests that current definitions of resilience used in validated survey measures do not match how adults living with SCD define resilience. Our results expand the understanding of resilience as a dynamic process, more about the process of "not giving up." These findings suggest that providers may find it productive to facilitate conversations with adults living with SCD around "how" they approach challenges. This study is also the first of its kind to examine resilience in a community living with SCD.

The Public Performativity of Trust.

Building trust between academic medical centers and certain communities they depend on in the research process is hard, particularly when those communities consist of minoritized or historically marginalized populations. Some believe that engagement activities like the creation of advisory boards, town halls, or a research workforce that looks more like community members will establish or reestablish trust between academic medical centers and racialized communities. However, without systematic approaches to dismantle racism, those well-intended actions become public performativity, and trust building will fail. In this essay, we draw upon foundational ethical principles of trust, distrust, and trust building; apply the concept of bounded justice to performative trust acts; and center the works of Black and Indigenous feminist bioethicists to revisit some of the wisdom and valuable lessons they have contributed. Rebuilding trust is hard to do because people and institutions are often not honest about how hard it is and there is no simple box-checking task that can disentangle our society's injustices, but there are steps to take in this direction. Individuals and institutions can recognize valuable relevant work that has already been written, partake in critical reflection, and then apply insights gained to take both small and sustainable steps toward transformational change and deeper trust.

A Critical Analysis of White Racial Framing and Comfort with Medical Research.

OBJECTIVE: Analyze racial differences in comfort with medical research using an alternative to the traditional approach that treats white people as a raceless norm. METHODS: Quantitative analysis of survey responses (n = 1,570) from Black and white residents of the US to identify relationships between perceptions of research as a right or a risk, and comfort participating in medical research. RESULTS: A lower proportion of white respondents reported that medical experimentation occurred without patient consent (p < 0.001) and a higher proportion of white respondents reported that it should be their right to participate in medical research (p = 0.02). Belief in one's right to participate was significantly predictive of comfort (b = 0.37, p < 0.001). Belief in experimentation without consent was significantly predictive of comfort for white respondents but not for Black respondents in multivariable analysis. CONCLUSIONS: A rights-based orientation and less concern about the risks of medical research among white respondents demonstrate comparative advantage. Efforts to diversify medical research may perpetuate structural racism if they do not (1) critically engage with whiteness and its role in comfort with participation, and (2) identify and respond specifically to the needs of Black patients.

"Bounded Equity: The Limits of Economic Models of Social Justice in Cannabis Legislation".

Social equity provisions in cannabis legislation are premised on the hope that the profit generated around adult-use cannabis can be leveraged to ameliorate the damage done by racially biased enforcement of prohibition in black and brown communities. As such, they encapsulate an attempt to reconcile the history of racism in the enforcement of cannabis law through its new future as a profit generating commodity. These programs are gaining traction, but with minimal empirical examination. The development and implementation of these programs raises a number of questions in need of study that we outline in this paper. We argue that Creary's concept of bounded justice-which critiques the inherent limitations of social justice projects that ignore structural forms of social exclusion-can provide a framework for critical understanding of the limitations of such programs, ethnographically grounded empirical research, and a framework for evaluating the justice impacts of legislation. Specifically, we argue that in order to interrogate the possibilities for social justice projects around cannabis, we must address equity at a deeper level by working with communities to investigate hyper-localized and historical factors that have influenced systems and structures.

Applying anti-racist approaches to informatics: a new lens on traditional frames.

Health organizations and systems rely on increasingly sophisticated informatics infrastructure. Without anti-racist expertise, the field risks reifying and entrenching racism in information systems. We consider ways the informatics field can recognize institutional, systemic, and structural racism and propose the use of the Public Health Critical Race Praxis (PHCRP) to mitigate and dismantle racism in digital forms. We enumerate guiding questions for stakeholders along with a PHCRP-Informatics framework. By focusing on (1) critical self-reflection, (2) following the expertise of well-established scholars of racism, (3) centering the voices of affected individuals and communities, and (4) critically evaluating practice resulting from informatics systems, stakeholders can work to minimize the impacts of racism. Informatics, informed and guided by this proposed framework, will help realize the vision of health systems that are more fair, just, and equitable.

Laboratory-based inequity in thrombosis and hemostasis: review of the evidence.

The concept of normal in hematology, similar to that in other areas of medicine, is anchored to the perspective of those setting the standard. This means that several laboratory reference intervals and approaches to the conditions of thrombosis and hemostasis are influenced by the vantage point of those in power. Structural inequity, including systemic racism and sexism, can lead to inappropriate normalization of disease states, such as anemia or iron deficiency, or delayed diagnoses, such as in von Willebrand disease. This review will focus on how laboratory reference intervals perpetuate the cycles of inequity in care of patients with disorders of thrombosis and hemostasis. We provide examples and case studies in maternal mortality as well as in disorders such as von Willebrand disease and iron deficiency, question physiology versus pathophysiology, acknowledge the distinction between social constructs and biologic influence, and highlight opportunities for much-needed restructuring in areas such as defining anemia and iron deficiency.

Pivot: partisan policy responses to COVID-19 health disparities.

How did partisanship influence rhetoric about, public opinion of, and policies that prioritize racial and ethnic health disparities of COVID-19 during the first wave of the pandemic between March and July 2020? In this retrospective, mixed-methods analysis using national administrative and survey data, we found that the rhetoric and policy of shared sacrifice diminished and partisan differences in pandemic policy increased once it became clear to political elites that there were major racial disparities in COVID-19 cases and deaths. We trace how first disparities emerged in data and then were reported in elite, national media, discussed in Congress, and reflected in public opinion. Once racial disparities were apparent, partisan divides opened in media, public opinion, and legislative activity, with Democrats foregrounding inequality and Republicans increasingly downplaying the pandemic. This temporal dimension, focusing on how the diffusion of awareness of inequalities among elites shaped policy in the crucial months of early 2020, is the principal novel finding of our analysis. Overall, there is a clear, partisan policy response to addressing COVID-19 racial disparities across media, public opinion, subnational legislative activity, and congressional deliberations.

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science.

BACKGROUND: The National Hemophilia Foundation (NHF) conducted extensive all-stakeholder inherited bleeding disorder (BD) community consultations to inform a blueprint for future research. Sustaining and expanding the specialized and comprehensive Hemophilia Treatment Center care model, to better serve all people with inherited BDs (PWIBD), and increasing equitable access to optimal health emerged as top priorities. RESEARCH DESIGN AND METHODS: NHF, with the American Thrombosis and Hemostasis Network (ATHN), convened multidisciplinary expert working groups (WG) to distill priority research initiatives from consultation findings. WG5 was charged with prioritizing health services research (HSR); diversity, equity, and inclusion (DEI); and implementation science (IS) research initiatives to advance community-identified priorities. RESULTS: WG5 identified multiple priority research themes and initiatives essential to capitalizing on this potential. Formative studies using qualitative and mixed methods approaches should be conducted to characterize issues and meaningfully investigate interventions. Investment in HSR, DEI and IS education, training, and workforce development are vital. CONCLUSIONS: An enormous amount of work is required in the areas of HSR, DEI, and IS, which have received inadequate attention in inherited BDs. This research has great potential to evolve the experiences of PWIBD, deliver transformational community-based care, and advance health equity.

Research into how people get their health care, called health services research, is important to understand if care is being delivered equitably and efficiently. This research figures out how to provide the best care at the lowest cost and finds out if everyone gets equally good care. Diversity and inclusion research focuses on whether all marginalized and minoritized populations (such as a given social standing, race, ethnicity, sex, gender identity, sexuality, age, income, disability status, language, culture, faith, geographic location, or country of birth) receive equitable care. This includes checking whether different populations are all getting the care they need and looking for ways to improve the care. Implementation science studies how to make a potential improvement work in the real world. The improvement could be a new way to diagnose or treat a health condition, a better way to deliver health care or do research, or a strategy to remove barriers preventing specific populations from getting the best available care. The National Hemophilia Foundation focuses on improving the lives of all people with bleeding disorders (BD). They brought BDs doctors, nurses, physical therapists, social workers, professors, and government and industry partners together with people and families living with BDs to discuss research in the areas described above. The group came up with important future research questions to address racism and other biases, and other changes to policies, procedures, and practices to make BD care equitable, efficient, and effective.

How do you solve a problem like Maria? The politics of disaster response in Puerto Rico, Florida and Texas.

COVID-19 is not the first, nor the last, public health challenge the US political system has faced. Understanding drivers of governmental responses to public health emergencies is important for policy decision-making, planning, health and social outcomes, and advocacy. We use federal political disaster-aid debates to examine political factors related to variations in outcomes for Puerto Rico, Texas, and Florida after the 2017 hurricane season. Despite the comparable need and unprecedented mortality, Puerto Rico received delayed and substantially less aid. We find bipartisan participation in floor debates over aid to Texas and Florida, but primarily Democrat participation for Puerto Rican aid. Yet, deliberation and participation in the debates were strongly influenced by whether a state or district was at risk of natural disasters. Nearly one-third of all states did not participate in any aid debate. States' local disaster risk levels and political parties' attachments to different racial and ethnic groups may help explain Congressional public health disaster response failures. These lessons are of increasing importance in the face of growing collective action problems around the climate crisis and subsequent emergent threats from natural disasters.

Usability of NewSTEPs Data for Assessing the Characteristics of Infants with Newborn Screening Disorders.

Most state newborn screening programs in the U.S. currently contribute case data to the Newborn Screening Technical Assistance and Evaluation Program (NewSTEPs). To assess the usability of these data for research, we examined the completeness of key variables, particularly race and ethnicity. Data included 24,129 cases of 34 newborn screening disorders from 45 states available in NewSTEPs as of 31 August 2020. Birth years of cases ranged between 2006 and 2020. Rates of missing data for sex, gestational age, birth weight, and race/ethnicity were 3.8%, 31.7%, 7.0%, and 39.7%, respectively. After excluding 21 states for which ≥50% of cases had missing data on race and/or ethnicity, 16,010 cases from 24 states remained. The disorders with the highest proportions in which cases were recorded as Hispanic ethnicity/any race were methylmalonic acidemia (48.7%) and maple syrup urine disease (45.7%). Analyses indicated that sex and birth weight data in NewSTEPs are reasonably complete, but missing data are common for gestational age and race/ethnicity. Despite this, our analyses revealed several novel associations between race/ethnicity and newborn screening disorders, such as the high burden of maple syrup urine disease among Hispanic patients. This demonstrates the potential usefulness of NewSTEPs for research if investments in higher-quality data are made.

Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.

BACKGROUND: Precision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared. OBJECTIVE: This paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology. METHODS: We conducted public deliberations with patients who had a current or former cancer diagnosis. A total of 61 participants attended 1 of 2 deliberative sessions (session 1, n=28; session 2, n=33). Study team experts led two educational plenary sessions, and trained study team members then facilitated discussions with small groups of participants. Participants completed pre- and postdeliberation surveys measuring knowledge, attitudes, and beliefs about precision oncology and data sharing. Following informational sessions, participants discussed, ranked, and deliberated two policy-related scenarios in small groups and in a plenary session. In the analysis, we evaluate our process of developing the deliberative sessions, the knowledge gained by participants during the process, and the extent to which participants reasoned with complex information to identify policy preferences. RESULTS: The deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group's decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing. CONCLUSIONS: The deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations.