FOREWORD
The unfolding science of patient engagement
Over the last 5 years of evangelizing a new view of the role of the patient in medicine, it has become apparent to me that changing the cultural conversation about who is capable of what is challenging because it creates a shift in the balance of power. The people that had been viewed as the responsible leaders can experience a loss of power and authority. While the Scientific Revolution brought an understanding of how medicine works, one of the unintended side effects was the disenfranchisement of anyone without medical training. Today, we are in an era of awakening that recognizes the need to better incorporate patients in their own treatment programs. We cannot co-create healthcare systems if providers do not accept patient engagement as both helpful and necessary. In my case, my oncologist agreed to be quoted in the British Medical Journal saying that the information I got from a patient community about how to cope with side effects of a treatment that sometimes kills people increased my chances of survival. Clearly, change is possible when knowledge in the patient community is harnessed. I propose that we need a new scientific approach to understanding the role of the patient.
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In order to create that, we must acknowledge the clear evidence that activated, engaged and informed patients today are quite capable of truly improving their outcomes. If we create a scientific model for patient engagement, one of the parameters will be usability. In any other industry, if what you want the customer to do is too difficult, you go out of business. In medicine, you blame the victim. The art of culture change – in healthcare as well as any other matter – is to see clearly what is newly possible without giving up what has always been valuable. This publication helps guide us to that goal by outlining our current state of affairs and offering exciting opportunities for change. One of the most wonderful things that could happen in my view is for the doctors and nurses and researchers whose work saved my life to find that they themselves now have a better life because their contributions can unfold in a richer more effective environment. That is co-creation.