Dr. Joseph Sirven: How Patients Are Creating Their Own Medical Solutions

Published: Wednesday, August 14, 2019 - 7:54am
Updated: Wednesday, August 14, 2019 - 7:55am
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Dr. Joseph Sirven.

I told my patient and his parents, “I’m sorry, but there are literally no therapies for this condition.”

My patient’s father paused for a long time and then said, “What if I created something? I’m a smart software engineer. Why not?”

“Why not?” I responded.

One of the most interesting changes over the course of my career as a neurologist is watching how often patients have literally created solutions to vexing health problems. From venture capitalists to good Samaritan hobbyists, it seems like I’ve met so many patients and their families taking it upon themselves to do what has been the traditional roles of the pharma and device industry. With a $16 trillion health care market ripe for disruption, I’m not surprised by this trend.

Take the example of the very recently approved pharmaceutical grade cannabidiol for epilepsy. The use and purification of cannabidiol — one of the 400 compounds found in the marijuana plant — was completely pioneered and conceived by a Facebook group of parent advocates who did the research, found the scientists and the investors, which led to a clinical trial, and then showed up in droves to testify at the FDA hearing on the compound which all culminated with the approval of the first medical marijuana compound for a neurological condition.

But it doesn’t stop there. Although no formal statistics exist, a simple survey of my own area of medicine, epilepsy neurology, shows that the number of smartphone apps and products created by dedicated family members and both their for-profit and not- for-profit organizations is staggering.

These same groups have created wearable seizure alert watches with links to pre-selected emergency phone contacts, which will dial first responders when a patient cannot. Others have created anti-suffocation pillows and placemats that prevent seizure injuries.

This trend is not confined solely to the world of neurology and epilepsy. A quick Google search for home based health inventions yields a catalog of products invented by patients and their families because the medical community was not quick enough to create the product for them.

Sadly, most solutions never make it beyond the garage where it was created. But you gotta admire the plucky can-do attitude and chutzpah, sparked by a desperate need to help the ones we love. I’m certainly not the first nor the last person to observe this trend since it has been written about since the time of the ancient Greeks.

To paraphrase Plato and a recent internet meme: “Necessity is the mother of invention, but desperation is the father of brilliance.”

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