Patient centricity and trust in healthcare transformation are recurring themes in this digest and in my career. I’ve been and will continue to champion the importance of including patient perspectives in the innovation, design, delivery and payment of health care as I believe that their (our) experience is the most authoritative and authentic to guide our understanding of the building blocks of health, its quality and its value to both the patient and society at large. Patients have been vocal advocates, tireless researchers, developers of rich information resources and even innovators in medical solutions. And yet, there remains a “glass ceiling” under which patients and patient organizations continue to struggle: their voice is dismissed as over-emotional or not evidence-based enough, their data is downgraded as not rigorous enough (until it’s bought by the likes of a behemoth for-profit enterprise), their inventions are stifled by the intricacies of regulation. Like the conversation starting in the open-science movement and now, the world of scientific presentation, we need a radical change to our thinking. The patient’s perspective and experience should be the holy grail, the alpha and the omega, the genesis for finding the solutions and measuring the results. Not a “nice to have,” not a checkbox, not a token, not an afterthought, not a gold star, not a commodity to be leveraged. Wherever you sit in the health care system, be the champion for that vision. Someday (I hope), we may get it right.
