Edited detail from a page from a report showing economic impact of the pandemic by ethnicity.

Shutting the Digital Back Door

Kim Gallon, PhD, MS, MLIS, will speak on Tuesday, October 4, 2022 at 1:00 PM ET. This talk will be live-streamed globally, and archived, by NIH VideoCastingDr. Gallon is Associate Professor of Africana Studies at Brown University, and Just Tech Fellow at the Just Tech Program, Social Sciences Research Council. Dr. Gallon’s talk—the first of two virtual lectures that are part of the Data, Health, and the Digital Humanities: Shared Horizons II virtual workshop—is co-sponsored by the National Endowment for the Humanities as part of the NLM/NEH partnership to collaborate on research, education, and career initiatives. Circulating Now interviewed her about her research and upcoming talk.

Circulating Now: Please tell us a little about yourself. Where are you from? What do you do? What is your typical workday like?

A black woman in front of a bookshelf.Kim Gallon: I grew up in South Jersey and have lived in the Philadelphia area and West Lafayette Indiana for much of my life. I presently live in Providence, Rhode Island where I am an Associate Professor of Africana Studies at Brown University.

My entrance into higher education was through librarianship.  I received my MS in  library and information science from Drexel University and worked at the Van Pelt Library at the University of Pennsylvania as the African American Studies Bibliographer for a couple of years. I also served as the part-time reference librarian for the Paul Robeson library at Rutgers-Camden and ran a small public library branch in Cheltenham, PA.

My research, teaching, and service are a collage of critical race and gender theories, sexuality, media studies, technology, urban, visual culture studies, and health informatics. I am a member of diverse intellectual communities that drive innovative conceptualizations and practical applications of theory to the Black experience in the United States and in the larger Diaspora as well as the African continent. All of my work straddles the line between humanistic inquiry manifested in traditional historical methodological frameworks, and the black digital humanities, which I use to critically interrogate technology in relation to Black people’s lived humanity.

I am actively engaged in work that directly speaks to pressing social issues in Black communities. My work, COVID Black, one of the first academic responses in the liberal arts to the pandemic, serves as an example. Inspired by the formation of Black studies in the 1960s and its call to academic institutions to respond to the social conditions of Black people in the United States and abroad, I created COVID Black as a mobilization of black digital humanities for Black communities.

A Screenshot from the COVID Black website in the NLM Web Archive.
COVID Black captured July 16, 2021 in NLM Global Health Events Web Archive | View Archived Pages

For close to 3 years, COVID Black has amplified information about race, health information technology (IT), and data on social media. I have partnered with the American Medical Association, Center for Urban Community Services in New York City, the St. Francis Neighborhood Center in Baltimore, and the Blue Hills Civic Association in Hartford, Connecticut among other organizations, on community-based projects that are designed to connect Black communities to their health data as well as provide education on racism in medicine and healthcare.

One of COVID Black’s most impactful projects is titled, Homegoing. It aggregates unstructured data from close to 1,000 obituaries and death announcements for Black people who have died from COVID-19 and transforms it into a visualization that recovers Black humanity from “big data.” In the broader context of historical experience, as both a quantitative and qualitative historical record of today, COVID Black, holds the promise of becoming a useful and important future historical record.

CN: In your NLM History Talk, “Shutting the Digital Back Door: Creating Tech Justice with Health Data Liquidity and the Digital Humanities” you explore the concept of a ‘digital back door.’ Would you talk a little about what that that term means to you?

First page of a government report with a chart shwoing increasing use of data from electronic health records.
“Hospitals’ use of electronic health records data: 2015-2017,” 2019 by the U.S. Department of Health and Human Services, Office of the National Coordinator for Health Information Technology
National Library of Medicine #9918332987406676

KG: Digital back doors are technological processes and tools used in health care, such as racially biased algorithms, infrastructural limitations, and dirty data. These unwittingly exacerbate existing health inequities, which the World Health Organization defines as “systematic differences in the health status of different population groups.”

Their root cause is human made, due to the development and application of technology by some health information technology (health IT) developers and clinicians who fail to fully or explicitly consider equity in health care.

If health tech is truly committed to accessible digital front doors to health care, it must first acknowledge the digital back doors “evident in digital redlining, algorithmic bias, stigmatizing language in EHRs, and other forms of racism that are enabled through how health IT developers and clinicians use and apply digital technologies in health care. By jeopardizing the health of patients of color, digital back doors are a feature of health inequity.

Title Page of On the Pigment of the Negro's Skin and Hair.
On the Pigment of the Negro’s Skin and Hair, 1896
National Library of Medicine #http://resource.nlm.nih.gov/101484293

My background as a historian of Black life and a former librarian is helpful in providing people working in digital health a long view of structural inequity in medicine and health that is based on scientific racism in the eighteenth and nineteenth century. Documents such as “On the Pigment of the Negro’s Skin and Hair” establish a legacy of racism in medicine that defined people of African descent as biologically different than people with European ancestry. This history is essential for people using technology to create health systems and applications. It helps health IT developers gain a critical awareness of the past, and helps them understand how medicine, science, and technology are not objective and neutral fields of knowledge and praxis.

Educating people in working in health care about the history of racism helps mitigate the harm digital back doors cause patients of color.

CN: How can digital humanities methodologies help address health disparities?

KG: Scholars, including Ruha Benjamin, Safiya Umoja Noble, and Sasha Costanza-Chock, have critically exposed the ways in which some applications of data science and algorithms are racially biased. Their work transforms how we understand the technology that lies behind the curtain of the “Internet of Health Things” such as biomedical sensors, medical devices, and telemedicine. Nonetheless, these and other scholars have paid less attention to legislation and policy that informs the development of health IT relating to artificial intelligence (AI) and data. Indeed, researchers are just beginning to investigate what happens when electronic health systems are introduced at scale. Requiring much of healthcare to move online, the crisis of the pandemic has forced patients, clinicians and researchers to come to terms with the flaws in the design and development of health IT, particularly for people of color. Clinicians and scientists, as first responders, tend to focus on usability and less on legislation to better understand the issues with health IT.

Despite the critical insights they offer, clinical approaches often lack necessary insights to explore the intersections between structural racism, technology, design and health IT law and policy. My work takes a radically different approach from clinical studies and focuses on the design and development of health information technology by analyzing legislation of the Health Insurance Portability and Accountability Act (HIPAA) and Health Information Technology for Economic and Clinical Health (HITECH). I argue that racist biomedical technology, not racial health equity was and remains at the center of health IT policy.

Black DH is a theoretical lens that interrogates and analyzes whether health IT is based on a technological infrastructure that humanizes Black and Brown people. Therefore, I specifically center the humanity of Black and Brown people and unequivocally call out white supremacy and structural racism as obstacles to digital equality.

CN: What are some of the challenges you’ve encountered in gathering and analyzing data in your work?

KG: Although big data helps experts and us make informed life-saving decisions, it can obscure as much as it reveals. In the case of race and the pandemic, one of the stories behind COVID data is the disproportionate rates of illness and death among people of color. Mortality data has been instrumental in calling attention to the ways systemic racism disproportionately results in higher death rates within Black communities. Nonetheless, big data does not recover or restore humanity to our mothers, fathers, sisters, brothers, children, and other family members and friends who are gone. Instead, univariate measures of death listed neatly in spreadsheets confound the messiness and chaos that death brings to people’s lives.  Thus, as much as big data is valuable in identifying health disparities, it compresses Black humanity, a contested premise in the United States, into quantitative containers that offer a final dehumanizing insult in its inability to represent the Black lived experience. Indeed visualizing Black people’s death rates is more likely to cause, as bell hooks, American author and social activist, puts it, “the conditions for even greater estrangement, alienation, isolation, and at time grave despair.”

A page from a report showing disparities in economic hardship between white, black and latino populations.
“Beyond the case count: the wide-ranging disparities of COVID-19 in the United States,” 2020 by The Commonwealth Fund
National Library of Medicine #101773081

To be clear, the issues with big data are not new nor are they surprising. Thoughtful critiques are helpful, as are suggestions for quantitative methods that can transform big data into humanistic visualizations, for example, those achieved by Lauren Klein and Catherine D’Ignazio that “rebalance unequal distributions of power.”   Yet, these methods, even as useful as they might be, are unable to capture the full dimension of people’s lives, which is buried in big data.  I develop projects I hope might be one remedy for the problem with big data, projects that recover Black humanity from mechanisms that are designed solely to count the dead.

CN: How did you originally become interested in digital humanities? What inspires you in your work?

KG: As a former academic librarian, I became interested in digital humanities because it offers a method and approach for making information and knowledge discoverable to a larger and diverse public.  It allows me an opportunity to transform the field of Africana Studies by combining it with computational humanities, the intersection of data analysis, computer science, and humanities, and the black digital humanities. I am inspired by the opportunity to create data-driven inquiry and research that centers the methodological framework of Africana Studies. The integration of Africana Studies, data science, computational humanities, and digital humanities is indicative of the future trajectory of my research, teaching and service.

Kim Gallon’s presentation is part of our NLM History Talks, which promote awareness and use of the National Library of Medicine and other historical collections for research, education, and public service in biomedicine, the social sciences, and the humanities. All talks are live-streamed globally, and subsequently archived, by NIH VideoCasting. Stay informed about the lecture series on Twitter at #NLMHistTalk.

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