I can barely contain my happiness (oh heck, I’ll let it spill) at this: participatory patients and physicians creating educational content, using free internet software tools, and posting it for people to read (free) around the world.
I’m a member of the ACOR kidney cancer patient listserv, and a patient at Boston’s Beth Israel Deaconess Medical Center. My surgeon, Dr. Andrew Wagner, and my oncologist, Dr. David McDermott, head up the renal tumor program at BIDMC, which is an integrated “solution shop,” a term used in some of the latest views of how to design healthcare delivery systems.
As superb as they are (top of class), they’re also both really nice guys, soft-spoken and exceedingly patient-centered and participatory. (In Dr. Wagner’s case that’s extra generous, because when I awoke from the anesthesia I tried to grab my cane and whack him for hurting me. Nobody said empowered=coherent.)
Anyway here’s what grabbed me. Tonight as I prepared the third podcast for uploading I was caught by surprise, when I saw the stats for the previous interviews:
- Dr. Wagner on surgical options, May 12: 533 views
- Dr.McDermott on medical options, July 1: 350 views
Wow. I had no idea that little old me, sitting here in my dining room in Nashua NH, had recorded stuff (very amateurishly) that’s been heard almost 900 times.
As we consider what it’ll take to transform our healthcare system so it works for everyone, you better think about the impact of leaky information. It’s no longer accurate to presume that value arises in the healthcare ecosystem solely during care “transactions” in which Physician 1 meets Patient A, etc. To the contrary, in this case:
- Patient A saw Physician 1 and learned about a new treatment (MDX-1106) that’s in Phase I trials
- Patient A brought word of this to his ACOR patient community, where Patients B through ZZZ heard about it.
- Many questions arose.
- Patient D (me) asked Physician 1 for an interview to go over those questions.
- We used BlogTalkRadio (one of many free concall-recording sites) and Audacity (open source audio editor) and Utterli (free podcast upload site) and Blogspot to record, download, edit, upload and publish it. Not trivial, but on the other hand, I don’t own a single piece of recording equipment. Well, except my computer and telephone.
- The answers to those patient questions are now published, and can now be heard by anyone in the world who can find them.
For those who don’t remember, this is a wild manifestation of what our founder “Doc Tom” foresaw long ago in his famous “triangle slides.” Except he’d probably crack up giggling at how far it’s come.
“And that’s showbiz,” as Roxy said in Chicago. Actually that’s empowered patients, engaged in their care, equipped with free tools and enabled by them, getting educated, collaborating with participatory providers.
And FREE! This entire effort consumed $0 out of the $2.4 trillion US healthcare tab – and it put more info in the hands of those who need it than many high-cost programs.
I just love social media. And participatory doctors and nurses.
(Oh yeah, if you want to hear the podcast about MDX-1106, it’s on my personal blog here.) (Unblushingly amateurish and unstoppable. And I did it all by myself.)