When Matthew Johnson registered the new Fitbit his parents had given him for Christmas, he was surprised to see data from a Fitbit scale he had owned three years earlier automatically connect to the new account.
“That got me interested in how long companies are keeping data and what they’re doing with it,” said Johnson, a Master of Science in Library Science (MSLS) student who will start his second year at the UNC School of Information and Library Science (SILS) this fall.
Johnson used his own experience with wearable health tech as inspiration for a final project in his Health Informatics Seminar. The resulting paper, “Personal Health Data, Surveillance, and Biopolitics: Toward a Personal Health Data Information Literacy,” won the 2017 Miriam Braverman Memorial Prize, presented by the Progressive Librarians Guild (PLG). Johnson received $500 to help cover his travel expenses to the American Library Association (ALA) Annual Conference, where he was recognized at the annual PLG dinner on June 25. His essay will be published in an upcoming issue of Progressive Librarian, the PLG journal, and he will be given the opportunity to write about his experiences at ALA for the PLG bulletin.
Johnson’s winning paper argues for an expansion of data information literacy, particularly among people whose health information is being gathered and stored through various means by their doctors, researchers, or private companies.
“There’s a lot of writing about data information literacy for researchers and practitioners to help them better manage health data that has been collected from patients, but there’s not as much on the reverse side to help patients understand their data and how it’s collected and used,” Johnson said. “As patients, we’re all undergoing different amounts of surveillance now.”
Johnson also addressed the topic of biopolitics as one of four master’s students on a panel at the SILS Information for Social Good Symposium in April. Titled, “Who Knows What’s Good? Biopolitics, the State, and Health Information Access,” the panel examined current ethical dilemmas in respect to the withholding of medical intervention for trans youth, reproductive health and care, medical information in prisons, and the legality of advertisements for mental health medications.
Other highlights from Johnson’s first year at SILS included working as a Research and Education Library Intern at Duke University Medical Center and delivering a talk about collection development of academic books focusing on transgender theory at the Association of College and Research Libraries (ACRL) conference in March. The talk combined his current interest in academic libraries with a subject that had gotten his attention while he was earning his Bachelor of Arts in English from Virginia Tech.
“I was studying a lot of transgender theory for my women’s and gender studies courses, and I realized our library didn’t have many of the major canonical works in transgender theory,” he said. “I started thinking about the ways we develop collections and how collections reflect communities and their values.”
Community connection is an important theme in Johnson’s current life as a SILS student and his ultimate professional goals. This summer, he facilitated a critical theory reading group with some other master’s students as a way to more deeply explore a range of topics related to libraries and information science. He is also taking charge of the Community Workshop Series (CWS), a long-running volunteer program that helps local library patrons become more computer literate. Johnson is the first CWS coordinator hired by SILS since the school took over sponsorship of the program.
After completing his MSLS, Johnson hopes to enroll in UNC’s M.A. in Literature, Medicine and Culture program, further developing his expertise in the relationship between health care and the humanities. Eventually, he’d like to become a library liaison between health and other disciplines, and explore ways that universities can more directly and positively impact the communities that surround them.
“I’d like to see university institutions like libraries better leveraged to do more for local communities.”