Researching Myelopathy as a social scientist

My research is currently exploring social science and policy perspectives to the degenerative neurological disease of Myelopathy and its forms. Among other things, I explore:

  • neurotechnology and the health data ecosystem
  • health data and its ownership/stewardship, and how health data governance can be patient-centric.

This research is personal to me as someone who has been a caregiver in the past to a parent who lived and suffered with Myelopathy for more than a decade. I seek to bring this lived experience and my professional capacity as a social scientist studying digital media and policy, to work with people and communities engaged in addressing this debilitating health condition. I aspire to address our common concerns around how digital technologies serve as a site for caution, but also provide hope — in making Myelopathy matter.