I’m going to express something very personal here, because the community behind this blog is going through a profound transition, and it’s time for an acknowledgement.
Many of you who currently read this blog already know this but there will be a new wave of people joining this conversation, and I’ll be the first to thank “Dr. Tom” for what he started in the world by gathering this extraordinary group of people.
Dr. Tom Ferguson was apparently very, very far ahead of the curve. I mean, he was so far out of the box, it was like “WHAT box?”
I never met him, but I’ve recently been hearing about him from the members of the e-Patient Scholars Working group.
From what I hear, he would say it’s not about him, and it’s not about them. That’s not my point. I just want to personally, deeply, gratefully acknowledge their work.
My own medical adventure last year was not the same as it might have been, because throughout it, my doctors gave me tools and “permission” to play as active a role as I wanted in my own care. And you can believe, that left me feeling fully able to get my butt in gear – the absolute opposite of feeling “there’s nothing I can do – I’m screwed.” This is exactly what Tom had in mind: the e in e-patient ultimately stands for empowerment – the opposite of being powerless.
I keep hearing about patients who get a cancer diagnosis (4,000 a year in the US) and give up. I know first-hand what that diagnosis feels like, and I can tell you, you DO have a choice about who you’re going to be in the face of your circumstances. Even if you’re nearly a dead duck, like Randy Pausch, you can choose how you’re going to live your remaining moments.
The weekend of February 29 changed my life. It was a pivotal, transitional meeting of the working group. I was privileged to be there. Now that the group has finished Tom’s white paper it’s time for the next stage. There’s going to be a lot more vigorous conversation in the world about participatory medicine and empowered patients.
And at this turning point, I want to acknowledge the contribution to humanity made by Dr. Tom. It made a difference in my life (in saving my life) and it’s my intention to extend that to millions more people within my lifetime, not to mention beyond.