- This year's theme was Great eXpectations, and I could not have resonated more (see also my post All Eyes on Digital Health).
Great eXpectations - New topics
- There were incredibly powerful panel discussions, some bringing in new topics. I guess my selection here is based on what I found most humbling, in the sense that I was reminded of how much we take things for granted...
- Growing Up, Aging, and Adjusting
This panel brought to light many aspects of health that are often dropping of the radar in healthcare: independence, autonomy, dignity. I was glad to hear Christopher Scott recommending Oliver Sacks for a deep dive in such matters. Barbara Beskin is such an inspirational person. She made sure to leave our smartphone bent generation with the great advice to mind our posture in the light of a better ageing experience.
- Going from researching patients to patients researchers?
I cannot separate this panel from Tessa Richards beautiful talk on the great efforts BMJ is putting into changing the culture of medical research (BTW, here are her thoughts on this year Stanford Medicine X).
- - Being a patient can drive you take lead in research (Sara is currently a researcher herself). Similar theme is to be found in Emily Kramer-Golinkoff's story.
- Research outcomes may differ if defined by patient or researcher.
- A better understanding of what patients really need is required (see above BMJ's commitment in this direction and a wonderful older blog of Susannah's here). Research has to be grounded in patients' need.
- So much waste goes on directions that do not improve patient's life. "Funding is not for patient outcomes, is to produce papers" (Sara).
- Michael told us a bit about how change is happening inside NICE (UK), which engages patients in evaluations from the go.
- "Burden of tracking" - hint for innovators.
- - "360 degree access" to research.
- - What would be an ideal clinical trial.
- - Michael believes is very important to consider how more people could be included in research.
- Patients as entrepreneurs
I somehow connect this panel to the one I just talked about, because it deals essentially with the amazing resources, inspiration, wisdom and resilience patients and carers often have. And in the context of an almost beyond understanding harshness of life, they found the most amazing generosity. It is just so much to this point... Emily Lu moderated the stellar panel of Michael Seres, Darla Brown and Molly Lindquist.