My research uses population data and qualitative techniques to visualize and describe health disparities. Pairing rich storytelling with big data helps to better understand consumer health information behavior and decision-making. This research approach may present opportunities for innovations in health information technology and artificial intelligence to inform health policy and improve outcomes.
Breast Cancer (BRCA) Genetic Testing Decisions & Racial Disparities
Participation in Medical Research
Health Information & Vulnerable Populations
The Patients’ Rights Movement has been described as a slow-moving glacier of change to reduce disparities between the sick and the well (Annas, 1992). It was born in the 1960s, which represents a time in American history of resistance, protest, and collective attention to social and political change through movements. Many in the patients’ rights movement prefer to be referred to as consumers. The word choice is insightful because “patient” is derived from the Latin verb “pati,” or “one who suffers” whereas “consumer” from “consumere,” means “to use.”
Consumers must navigate a complex health care system and critically approach the abundance of health information to make informed choices such as undergoing genetic testing, participating in clinical trials, or selecting a primary care provider. Consumers need information that is easily accessible, accurate, representative, effective, and ethical to successfully support their decision-making while reducing anxiety, information overload, exploitation, and decisional regret.
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