Toward a New Science of Patient Engagement
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Last July I participated in a workshop on life after cancer at the National Academies of Sciences, Engineering, and Medicine in Washington. They’ve just published the final report, Long-term Survivorship Care after Cancer Treatment: Proceedings of a Workshop. It’s a free 160 page PDF.
I keep seeing patterns of thought that I frankly think are pretty benighted. With luck, shedding some light on them will help. This one is so STUCK in darkness that I’ve decided to publish a little series on the subject.
First is this editorial about patients in research. Next will be what happened when a researcher I know became a patient/family member. Then will be how this fits into a century-long timeline of progressing toward patient autonomy … which of course requires a matching increase in patient responsibility.
I just ran across this classic video from WAY back – 2010, when the “e-Patient Connections” conference was the best thing on the circuit for our kind of thinking. Pharma marketing wizard Kevin Kruse created the script, and my chorus buddy Fred “Houston” Gallagher helped me record my part in his basement studio.
After eight years of speeches at conferences, I’ve observed that while medicine achieves incredible miracles that were impossible a generation ago – like saving my sorry life – it still falls short of potential more often than necessary. Lots of people write big fat books about it, but some problems don’t change, which raises the question: what can we tell consumers of the system, patients, that will help them get the best care when they’re in need?
So that’s a new series of speeches I’ll be doing, not just at big conferences but at local meetings in cities and towns, hospitals and community centers. These talks aren’t designed to change the healthcare system much; to the contrary, they’ll empower ordinary people who use the system to help the system do its best.
To achieve its potential, healthcare must be democratized.
I’ve reached this conclusion after hundreds of speaking events in eighteen countries over nine years. For me “speaking” has always involved a lot of listening and learning, and the more I’ve learned, the more I’ve puzzled over this paradox:
In my years of work to optimize the future of healthcare, with hundreds of conferences and meetings in eighteen countries, people’s focus has shifted as the industry moves forward. For years the focus was on patient empowerment through access to the medical record. Today the greatest attention is on digital health: wristbands like my Fitbit, radical patient-power tools like OpenAPS, and even simple connected devices like my Nokia / Withings wi-fi bathroom scale. Through it all, the unifying theme of digital health is that data enables power – an updated version of “knowledge is power.”
But I’ve also observed that few people are savvy about both medicine and technology, which has led to medical people not seeing the potential and tech people being seriously naive about how complex medicine is, and both parties failing too often to understand that it’s all about behavior change.
One of the few people I’ve worked with who completely gets it is the young, visionary “Medical Futurist” Dr. Bertalan Meskó, at Semmelweis University in Budapest. I had the pleasure of lecturing in his course a few years ago, and we have continued to collaborate.