Now on demand, I am talking to Kevin McGrail (@KAMcGrail), Director of Business Growth at Infrashield and one of a few patients suffering from a rare disease “Anti DPPx Paraneoplastic Neurological Disorder” (you can read more about these diseases here) – one of only a handful of patients diagnosed with this.
Kevin is also an expert in SPAM (the e-mail kind) having written many papers and part of the Apache SpamAssassin project that powers some 30% of the spam filters in use today and a contributor to the incredible Apache open source foundation. He is also a key member of the early hacker tribe (or as he describes more aptly “Makers”) who paved the way for the hacking community and its exploration and innovation over the years.
He shares his harrowing journey of disease progression that had him unable to walk, talk or even see. Listen in to find his key incremental steps for a healthcare system that failed to acknowledge the serious and rare nature of his disease, mislabelling him as drug seeking and alcoholic (he is neither). He shares a similar story to one I have personally and hear frequently that finds families normalizing the steady decline in function and health associated with a disease making us blind to the disease affecting ourselves and our loved ones.
Your TL;dr of Incremental Steps
- Facilitate an interdisciplinary approach to diagnosing and treating patients
- Encourage and capitalize on patient engagement
- See past the echo chamber of existing experiences, data and clinical diagnostic trees
- Don’t use your patients as messengers of clinical information (put another way digital interoperability not sneakernet!)
- Medical Tests are not binary and that they may be diagnostic for a condition but absence of an indicator does not prove a negative (you can dive deep into this here)
Listen in to hear the details and find out about his early interaction with technology, bulletin boards and hacking and his first computer – the Commodore 64.
About the Show
For years Dr. Nick van Terheyden aka Dr. Nick, has served as a voice on the impact of new technologies on healthcare, earning a reputation as a leading authority on where the future of medicine is going. Combining powers of observation and real world experience, Dr. Nick has seen many predictions come true and makes the case that innovations in healthcare can be accomplished incrementally, not just by moonshot events. Tune in to hear Dr. Nick: The Incrementalist and his guests discuss what the future of healthcare looks like, how we will get there, and what it will take to improve healthcare for all.
This article was originally published on the Dr. Nick – The Incrementalist blog and is republished here with permission.