National Coordinator; John Santa, of Consumer Reports; Sue Sheridan, Deputy Director of Patient Engagement at the Patient-Centered Outcomes Research Institute; and Daniel Wolfson, Chief Operating Officer at the ABIM Foundation. We could go down each and every row and it would become clearly evident to us, as if isn’t already, that this room contains the kind of leadership that can really make a difference moving forward. Please take advantage of our time together to link deeply with each other on behalf of our mutual commitments to progress.

Now, it is my privilege to turn the meeting over to those who will frame the sessions. First, Dominick Frosch will speak on behalf of the sponsors to put the meeting in the context of the Moore Foundation’s plans for leadership in this arena. Following his comments, Planning Committee Chair Christine Bechtel will lead us into the agenda. Thank you all very much.

Opening Remarks and Meeting Overview

Dr. Dominick Frosch

DR. FROSCH: Thank you very much, Michael, and good afternoon everyone. I am delighted to be here today and to welcome such a large group for discussion on this very important topic: meaningfully engaging patients and families in their health care.

On behalf of the Gordon and Betty Moore Foundation, I want to express my sincere thanks to Michael McGinnis and the tireless staff at the Institute of Medicine for all of their hard work in developing this terrific agenda that we have here. And I especially want to thank Christine Bechtel and members of the Planning Committee for all of their work. Finally, I extend my appreciation to today’s presenters for sharing your work with us here.

Now, before we delve into the specifics of how we advance the engagement of patients and families in creating a health care system that produces better outcomes and better value, I would like to spend just a few moments sharing a personal story with you. And I would like to think that this story captures some of the spirit of why we’re all here and working so hard to transform health care.

Some of you know me as a researcher, and I have been interested in shared decision making for over a decade. In recent years, I have concentrated my work on trying to implement shared decision making in routine care. Later today, Grace Lin will present work that she and I led together.

But there’s also a very personal side to this research and it’s a large part of why I was drawn to this issue in the first place. Just before I turned 17, I was diagnosed with type 1 diabetes; it was a diagnosis that was life changing. I was fortunate enough to be diagnosed in a hospital where, after I was stabilized on an insulin regimen, I went through a training program that lasted 5 full days and taught me everything that I needed to know to be able to manage the condition, to understand what it did and what I needed to do every day to be able to avoid the complications that can result from diabetes.

Now I wasn’t a model patient right away, and it took me about 6 years until I woke up one day and fully realized that all of my care was really in my hands, and that my ability to avoid the complications that can result from diabetes depended on what I did every day. So I test my blood sugar an average of eight times a day and I always know the trajectory of that blood sugar and where it’s going. In the language of medicine, I practice tight control and I’ve been doing that for almost 20 years.

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