Making Communities More Visible: Equity‐Centered Data to Achieve Health Equity

Abstract

Despite decades of research exposing health disparities between populations and communities in the US, health equity goals remain largely unfulfilled. We argue these failures call for applying an equity lens in the way we approach data systems, from collection and analysis to interpretation and distribution. Hence, health equity requires data equity. There is notable federal interest in policy changes and federal investments to improve health equity. With this, we outline the opportunities to align these health equity goals with data equity by improving the way communities are engaged and how population data are collected, analyzed, interpreted, made accessible, and distributed. Policy priority areas for data equity include increasing the use of disaggregated data, increasing the use of currently underused federal data, building capacity for equity assessments, developing partnerships between government and community, and increasing data accountability to the public.

The Urgent Need to Advance Health Equity: Past and Present

“…Health care payment reform will continue to be of particular importance. 7 As Heckler's Task Force noted so long ago, collaborations and partnerships 7,8,16,30 will be essential to drive real progress. National organizations are now teaming up to transform health care.…”

“…LGBTQ+ individuals in the United States face significant health disparities rooted in societal stigma and discrimination, poor cultural competency, or an absence of tailored interventions and programs to address their needs. [2][3][4] Over the years, researchers and advocates have documented well-established disparities across a myriad of health outcomes including mental health, 7,8 suicidal ideation and behavior, 9 substance misuse, [10][11][12] cancer prevention and care, [13][14][15] HIVand other sexually-transmitted infections (STIs), [16][17][18] cardiovascular diseases, 19 violence, 20,21 and discrimination. [22][23][24] LGBTQ+ individuals, particularly transgender and gender-nonconforming individuals, also frequently encounter barriers to accessing appropriate and affirming healthcare, leading to delays in necessary interventions.…”

Racism and Health: Three Core Principles

“…Data and measurement are another key arena in assessing and addressing racism in health. In another essay in this issue, Ponce and colleagues argue that data equity is essential to health equity 124 . They define data equity as the process and outcome of allowing marginalized community members to “shape how data are collected, analyzed, interpreted and distributed such that is meaningful and can be easily accessed by and for their communities.” 124 This process rightfully centers the voices of oppressed people in defining appropriate metrics to capture essential research constructs, developing research questions that uncover how inequality operates, and guiding ethical data collection and data use strategies.…”

“…In another essay in this issue, Ponce and colleagues argue that data equity is essential to health equity 124 . They define data equity as the process and outcome of allowing marginalized community members to “shape how data are collected, analyzed, interpreted and distributed such that is meaningful and can be easily accessed by and for their communities.” 124 This process rightfully centers the voices of oppressed people in defining appropriate metrics to capture essential research constructs, developing research questions that uncover how inequality operates, and guiding ethical data collection and data use strategies. Complementing this, we add that capturing the ways racism operates in conjunction with interlocking forms of oppression in society also requires attentiveness to the heterogeneity within broad racial categories 18 .…”

The Urgent Need to Advance Health Equity: Past and Present

“…6,7 Indeed, data for nearly every health outcome illustrate that we still have a very long way to go. 8 A recent review of data from 1999-2020 revealed that, compared to White Americans, Black Americans had more than 1.6 million excess deaths and more than 80 million excess years of life lost. 9 There are continued disparities in the prevalence of diabetes among different racial and ethnic groups: 7.4% of White Americans have been diagnosed with diabetes as compared to 11.8% of Hispanic Americans, 12.1% of Black Americans, and 14.5% of American Indian and Alaskan Native Americans.…”