RISE: Research with inclusion, social justice and equity

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Research with inclusion, social justice and equity (RISE) is a new health equity initiative created by Stanford radiology residents and faculty. RISE is focused on increasing racial/ethnic data transparency in medical research cohorts. Unfortunately, 95% of medical research is currently colorblind,1 which is an “an ideology or worldview that minimizes the role of systemic racism in shaping outcomes for people of color and attributes racial disparities to the choices and poor behavior of racial minorities.”2  

The state of medical research cohorts

In modern medicine, treatment guidelines are created from evidence-based research outcomes, and colorblind medical research can perpetuate systemic racism with devastating impacts on a diverse national and global patient population. For example, JAMA recently published a study showing that pulse oximeters overestimate oxygen saturation levels in African-American, Hispanic and Asian patients compared to white patients.3 A follow-up study confirmed that patients of color in the hospital with COVID-19 were more likely to receive less than adequate oxygen supplementation compared to white patients.4 If pulse oximeters had been developed and tested on a diverse patient population prior to reaching the market, such an outcome may have been circumvented.

Similarly, higher rates of amputation are reported in African-American patients with peripheral arterial disease as compared to white patients.5 Lack of diversity in clinical trials results in the creation of pharmaceuticals and interventions with uncertain efficacy and safety in underrepresented populations. Additionally, bias in artificial intelligence algorithms created from unbalanced datasets can further perpetuate systemic racism. For example, one algorithm published in Science suggests that African-American patients should receive comparatively less care as compared to white patients based on datasets reflecting the disproportionate lack of access to healthcare in the African-American population.6

In 2021, in light of increasing health disparities highlighted by the COVID-19 pandemic, the New York Times claimed, “Medical Journals Blind to Racism as a Health Crisis.” RISE was created to address this public outcry for health equity in medical research. The RISE mission is to empower clinicians and clinical researchers nationally to report the breakdown of underrepresented populations in all future work, as appropriate.

The RISE solution

The first step to combating colorblindness in medical research is ubiquitous racial/ethnic data transparency. With a baseline of data transparency, the medical research community can finally begin to allocate resources toward achieving representative research cohorts. In addition, racial/ethnic data transparency can encourage HIPAA-compliant data collaborations to power systematic reviews or meta-analyses and facilitate meaningful subanalyses to aid health disparities research.

The #pledgetoRISE movement offers resources to help physicians take the first step, such as an implicit bias test and a research guide with tips on how to work toward equitable research. The research guide was adapted from the Urban Institute's Guide for Racial Equity in the Research Process and acts as a collaborative, living document.

The guide focuses on four key areas: literature search and team forming, study design, data collection and analyses, and communication and publishing. Each section contains questions that researchers are encouraged to ask themselves and their team, in order to investigate the intentions behind each step of the research process, from, “Is this problem exacerbated in communities of color or in systemically divested populations?” to “Are researchers who have considered this research topic from a racial equity perspective cited?”

Making your pledge

The first step in advocating for health equity in medical research is by sharing the demographic breakdown of research cohorts by race and ethnicity when possible and appropriate. The #pledgetoRISE movement invites researchers to share this data—and even if there is no inclusion of underrepresented populations within your study, the transparency is critical to helping the medical research community better understand the lack of representation.

Learn more about advancing health equity in medical research at pledgetorise.org and #pledgetoRISE today!

References:

  1. Bokor-Billman T, Langan EA, Billmann F. The reporting of race and/or ethnicity in the medical literature: A retrospective bibliometric analysis confirmed room for improvement. J Clin Epidemiol. 2020;119:1. doi.org/10.1016/j.jclinepi.2019.11.005.
  2. Okah E, Thomas J, Westby A, Cunningham B. Colorblind racial ideology is associated with the use of race in medical decision-making. Health Services Research. 2021;56(S2):89–88. doi.org/10.1111/1475-6773.13844.
  3. Fawzy A, et al. Racial and ethnic discrepancy in pulse oximetry and delayed identification of treatment eligibility among patients with COVID-19. JAMA Intern Med. 2022 Jul 1;182(7):730–738. doi: 10.1001/jamainternmed.2022.1906.
  4. Gottlieb ER, Ziegler J, Morley K, et al. Assessment of racial and ethnic differences in oxygen supplementation among patients in the intensive care unit. JAMA Intern Med. 2022;182(8):849–858. doi:10.1001/jamainternmed.2022.2587.
  5. Mustapha JA, Fisher BT, Rizzo JA, Chen J, Martinsen BJ, Kotlarz H, Ryan H, Gunnarsson C. Explaining racial disparities in amputation rates for the treatment of peripheral artery disease (PAD) using decomposition models. J Racial Ethn Health Disparities. 2017;4(5):784–795. doi: 10.1007/s40615-016-0261-9.
  6. Obermeyer Z, Powers B, Vogeli C, Mullainathan S. Dissecting racial bias in an algorithm used to manage the health of populations. Science. 2019;366(6464):447–453. doi: 10.1126/science.aax2342.