In July, the patient engagement movement lost our founder, Jessie Gruman. Jessie defined patient engagement as "the actions we take to support our health and to benefit from health care." As I reflect on this, I see that we have come to a crossroads. Jessie can no longer lead us and the organization she formed, CFAH, will soon cease. There are not enough words to thank the able and caring CFAH staff who have seen this transition to completion. This leaves us, you and I. Are we ready, will we fly? Will we flounder? I don’t know about you, but I am frightened.
As I write, I feel Jessie prodding me. "Of course you can do this; you have been doing it for years. Now be more thoughtful, you represent something much bigger than your self-interests." So I take a breath and look back at the definition. "The actions we take to support our health..." This definition is from the view of a patient – not a professional helping a patient. Before we can help others, we must help ourselves.
OK, I understand this. Like Jessie, I am a lifelong patient, having being born with a genetic disease. Like Jessie, I am a professional who has spent most of my life helping patients to take actions to support their health and benefit from health care. Unlike Jessie, my voice is more strident, less thoughtful, less nuanced.
Each of you is probably in a similar position. You share some of Jessie’s interests and traits and yet have your own voice. Now is the time for us to let our voices continue the discussion and to push the patient engagement agenda forward.
Much has already been accomplished. Health care, in theory, is becoming more patient-centered. We have the Patient Centered Outcomes Research Institute (PCORI) to push the research agenda and the National Institutes of Health is calling for self-management proposals. Yet despite these noteworthy gains, most patients are not engaged. They do not have the skills and confidence or a means to acquire them. Our health care systems, largely, discourage engaged patients. This is where we come in. It is time for us to grow up and take over.
We are a ragtag army. We are a movement. We are the future of health care. The challenge is how to move forward. I would suggest the following: Each of us take on the mantle of representing the movement. I would urge us each to make a resolution, or an action plan of specific things we will do to advance patient engagement.
About a year ago, I talked with Jessie about how I might best do this. She encouraged me to become involved with PCORI and so I applied to be on one of their advisory panels representing patients. My application read in part that my qualifications included being a genetic mutant and knowing something about science. Against all odds, I was selected. So now I juggle hats, sometimes that of patient, sometimes that of professional and often times both at the same time.
Always, I am thinking, "What would Jessie say?" How can I best model and represent the role of an engaged patient? I also volunteer in our hospital spiritual care center, where I visit very sick patients, engaging them and being engaged by them. At the end of each shift I have gained much more than I have given.
This is my path. One small step at a time. Each of you will find your own. As we close out the year and this chapter on patient engagement, I urge each of you to share your resolution in the comments. Maybe one of you will sponsor a blog so that we can continue the joint discussion. It is very clear that ready nor not, we are the parents now.