In our society’s work (home page quote: “promoting the concept of participatory medicine“), one thing we do is connect with others in this vast industry. Friendships and alliances are how we spread the word and evangelize our view of the future of medicine. (Frankly, it’s a lot easier to spread understanding into other organizations than to solely grow our own.:-))
Case in point: the huge HIMSS health IT organization and its book Engage! Transforming Healthcare Through Digital Patient Engagement, released last February. It’s entirely participatory in its thinking, its editorial bent, and its dozens of stories.
Before the big HIMSS conference in New Orleans last February, we ran a post from SPM President Sarah Krug about numerous ways members of HIMSS “get it” about participatory medicine and are working to spread the word. Not least was the book, which was released at that conference.
I love this book for many reasons. And, for one reason, it also drives me nuts. Why I love it and recommend it:
- The content is phenomenal. Story after story after story demonstrates why patient engagement with health data matters and how, specifically, it improves value.
- The editorial control is 100% aligned with the SPM vision.
- Editor Jan Oldenburg is an SPM member
- So is contributing editor Brad Tritle
- Contributing editor Kate Christensen is on the editorial board of our journal and has contributed several articles.
- The final contributing editor, Dave Chase, has long been aligned with participatory thinking.
- Dr. Danny Sands, SPM Co-founder and co-chair (and my doc), wrote the foreword
- Contributors include SPM members Natasha Burgert, Jane Sarasohn-Kahn, Jon Wald, Sue Woods and probably more whose names I don’t recognize, sorry
- And of course for the cover art they chose SPM member Regina Holliday.
As I say, story after story “makes real” how and why patient engagement with the record improves health and care. This is so important in an era when many providers and so many health IT professionals still don’t “get it.” This project documents that it’s real and it’s important. It’s a stake in the ground, looking back, looking around, and looking ahead. Can anyone point to any other book that even comes close to this level of achievement in showing why patient engagement through IT is important? (I mean that question seriously – if there’s another, please say so in the comments.)
So, why does it drive me nuts? Because this excellent, potentially world-changing ~250 page black-and-white book costs $84. Actually $70, with a 20% surcharge if you’re not a HIMSS member.
And boy does that affect how many people will read it.
In contrast to that, the gorgeous new book created by Parkinson’s Disease patients is the same size, full color, and sells for $35. (It was released last week.)
I have no first-hand knowledge but I’d bet a hefty chunk of Engage’s price goes to overhead for the organization. In any case, I say this:
- This book is a master achievement and deserves to be widely read.
- Health IT professionals, if you want to understand why patient and family engagement is important, get this book and read it. If necessary to justify the expense, point to this blog post. As a former data geek and marketing guy myself, I promise that you’ll make better products if you understand this book. And remember – patient is not a third person word. Your time will come.
- HIMSS executives, please drop the price to where hoards of people will read it. Heck, drop it to the price of the full color Parkinson’s book. Our organizations have lots of overlapping members because our causes have lots of overlap.
- Everyone, tell your colleagues, your doctors, your practice’s IT people to read it.
Changing culture is no trivial task; nor is a massive overhaul of technology in a huge industry. This book provides a sane, clear map of why these changes are important and must be done right. Thank you to the HIMSS members who conceived and produced it and the SPM members who participated.
Hi and thanks for this timely article. I just wrote a consumer workbook that help individuals collect and organize their health data, and use that data to build skills in problem solving, decision making, and creating a lifestyle plan. I would love to talk to someone about it. It will be on my website when the new site is up and running. Right now, my old site is still showing.
I am an RN, with an MS in community health education