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Workshop: The Social Life of Medical Data
June 10, 2015 @ 10:00 am - 5:00 pm
A one-day workshop on sharing, pooling and appropriating medical information
King Hall, Room 2100A (Law School)
Once digitized, medical information – such as data, images, standards, and codes – travels across different spaces and communities. Smartphones produce and transmit data coming from our bodies, which is shared and discussed in social media platforms and then gathered and analyzed in data centers. Medical information intended for professional use can be appropriated, circulated and used to create communities of caring or participate in biomedical research. At the same time new power asymmetries can emerge, as public institutions and private corporations claim control over increasingly valuable health data.
In this one-day workshop we will analyze the trajectories of digitized medical data. We will discuss how patient communities, care providers, social activists, governments and corporations are designing, fostering and managing alternative approaches to healing and increasingly look towards open source, distributed, and participatory research to do this. Data created from bodies has the potential to expand our understanding of health-related research and scholarly communication practices.
In addition, we will explore different ways of including patient communities in participatory design of tools that assist in the management and analysis of health data. We aim to foster a discussion amongst anthropologists, media scholars and biomedical researchers about the emergent forms of sociality and the politics of health and illness in our digital era.
Coffee and Continental Breakfast – 10:00 – 10:20
Opening Remarks – 10:20 – 10.30
Disrupting and Rebuilding: The Politics of Health Data – 10:30 – 12:00
Marina Levina, University of Memphis: Disrupt or Die: Mobile Health and Disruptive Innovation as Body Politics
Kim Surkan, MIT: ’Give Me My Damn Data’ and Other Online BRCActivism: The Hereditary Breast and Ovarian Cancer Community as Citizen Media and Data Sharing Advocates
Carlos Andres Barragan, UC Davis: Genetic Databases and Tests of Their Own: Admixture, Breast Cancer Genes, and Health Interventions in Andean Countries
Moderator: Alexandra Lippman, UC Davis
Lunch Break – 12:00 – 1:00
Big Data, Small Data. From Networks to Commons – 1:00 – 2:00
Nick Anderson, UC Davis: Clinical Research Networks: Discovery vs Disclosure
Orkan Telhan, University of Pennsylvania: Designing for the Medical Commons
Moderator: MacKenzie Smith, UC Davis
(Un)Digitizing Bodies and Selves – 2.00 – 3.00
Alessandro Delfanti, UC Davis: Hackers and Health Data: Open Sourcing the Body
Hélène Mialet, UC Davis: The Thinking Person’s Disease: Or The Quantified Self
Moderator: Xan Chacko, UC Davis
Coffee Break 3.00 – 3.30
Lunch will be served. Please RSVP at this link