In the past several weeks I have sat on two health care panels at multi-disciplinary conferences. The dialogue has been interesting, informative and occasionally challenging and disruptive. But on both panels, and in both conferences I was struck by the absence of an important voice, that of the patient. In healthcare we speak of being patient-centered, or encouraging patient engagement, but when we get together to talk about health and ideate about the future, patients are tellingly absent. That we are missing this important perspective is not surprising given the provider centric nature of modern healthcare, but the time has come to change.
Advances in digital health, wellness and personalized medicine are putting information into the hands of individual patients in a way that we have not experienced previously. Many patients already know more about the genes responsible for their metabolism and mental health than doctors do. Blogs devoted to bio-hacking help individuals make sense of this information and make it actionable. This information is outside the purview of regulation and traditional healthcare and some of it is provided by self-serving shills who are only interested in selling supplements. But dismissing this movement of individuals who have empowered themselves to know and understand their own health is to miss a powerful trend in health.
From this an organization has arisen around the following charter:
I am supportive of this approach and have begun to work with the organizations that I interact with to adopt this charter for programs delivered in Canada. I encourage each of you to do the same.
Check it out: patientsincluded.org