Location

Indianapolis, IN

Contact Information

Call:

Email:

Adam Hayden, MA

Stakeholder

Brain Cancer Quality of Life Collaborative

Adam Hayden, MA (@adamhayden) is a graduate trained philosopher, blogger, and speaker. In June 2016, Adam was diagnosed with the aggressive and deadly brain cancer, glioblastoma (GBM), a grade IV astrocytoma. Following his diagnosis, Adam quickly found ways to apply his formal training in philosophy of science and medical humanities to confront his disease from two distinct, yet complimentary, perspectives. By way of his interest in the history and philosophy of science, Adam studies 20th century competing theories of carcinogenesis, or the origin of cancer. Motivated by the medical humanities, particularly narrative medicine and narrative identity, Adam regularly lectures to both medical students and clinical practitioners on topics related to living with GBM. Adam also presents his work formally in academic conferences, for example, this talk delivered at the Communication Medicine and Ethics (COMET) international conference.

Adam’s involvement with the National Brain Tumor Society (@NBTStweets) brings Adam to attend scientific meetings and research roundtables, featuring top clinical neuro oncologists and researchers from leading academic and commercial labs. Adam is active with science communication (#scicomm) channels to learn effective methods to advocate for research funding in the brain tumor disease space. An example of Adam’s narrative approach to #scicomm is featured in this blog post he authored for the sciences journal, PLOS. Adam also co-moderates the Brain Tumor Social Media (#BTSM) monthly Twitter chat (@BTSMchat).

Adam sits on the executive board for the non-profit startup OurBrainBank (OBB), which enables patients to monitor, track, and manage their symptoms through a smartphone app designed for persons living with GBM. Users of the app consent to share their data with OBB where a medical review board led by neuro oncologists from Dana Farber and Columbia University direct the analysis of collected data to better serve researchers and industry professionals to access patient reported outcome (PRO) data in real-time. Adam directs advocacy and communications efforts for OBB, which is slated to launch in the Winter 2018, with IRB approval from the New England Independent Review Board (NEIRB).

Facing a life-limiting disease motivates Adam to do his very best work today, and he often jokes that if it weren’t for the terminal brain cancer, he’s in pretty good health. Adam documents his journey as a graduate trained philosopher living with glioblastoma at his personal blog, www.glioblastology.com.

Adam lives with his wife and their three children, in Indianapolis, Indiana.

Professional Appointments

  1. 2017-current
    Executive Board Member
    OurBrainBank
  2. 2017-current
    Advocate
    National Brain Tumor Society
  3. 2016-current
    Blogger
    Glioblastology