Why hasn’t big data & data crowdsourcing disrupted healthcare?, with Jamie Heywood

In this episode of the People Who Read People podcast, I interview Jamie Heywood (his Wikipedia page), about the benefits and challenges of conducting medical/health research using crowdsourcing of real-world, patient-reported data directly from the public. Heywood got his start on this career path when his brother was diagnosed with ALS; Jamie wanted to do everything he could do to maximize Stephen’s chance of survival. Jamie started ALS TDI to research and test treatments for ALS. Later, Jamie was co-founder and CEO of PatientsLikeMe, a platform for collecting real-world medical data directly from patients and giving them a network to share learnings about their conditions and treatments. He also is co-founder of biotech company AOBiome.

In this interview, Heywood discusses the strengths and challenges of big-data approaches to collecting medical data from the public, why such tactics haven’t been as revolutionary or mainstream as the potential suggests, and thoughts on healthcare challenges we face in general. Episode links:

Topics discussed include:

  • Big-data approaches of collecting health data directly from the public seems like it would have such groundbreaking potential, in similar ways to how big data approaches have revolutionized other industries. Why hasn’t it become more mainstream? What are the challenges in that area?
  • How crowdsourcing of real-world data can help differentiate symptom sets, and find hidden correlations.
  • How medical data confidentiality concerns may be misunderstood and can get in the way of using big data collection approaches for healthcare.
  • Thoughts on aspects of the medical research and healthcare industries that hold us back from using data in better ways.
  • Jamie started out as an idealistic young man motivated by frustration at seeing a loved one dying with a disease that had gotten little attention and research. If Jamie could go back in time to do that over again, what lessons would he bring with him? What would he do differently?
  • The frustrations of dealing with groups and guilds whose members can be arrogant and entitled in various ways, and how such psychological tendencies hold us back from making progress.
  • Thoughts on what it takes to solve problems optimally, including embracing being wrong and being ego-less.
  • Thoughts on how these approaches might help the study of Chronic Fatigue Syndrome (CFS, aka Myalgic Encephalomyelitis, or ME)