One year ago today I finished reading e-Patients: How they can help us heal healthcare, the e-patient white paper. It turned my head around because although I’d experienced excellent care in almost all ways, it showed that I as a patient have far more to contribute than I ever would have imagined.
The people who assembled that report (not me) are smart, perceptive, and insightful about the future. When I “synopsized” each chapter in posts on my own blog last summer, here’s what I wrote about chapter 2.
This chapter was my personal favorite, because it exploded so many myths and provided so much evidence that the change is already well underway.
Remember, I didn’t read this until late January 2008, six months after my treatment had ended. When I read it, my immediate question to the e-patient working group was, “How the (#@$! could I have gone through last year without ever hearing about this?? We need to get the word out!” So here we are.
From the introduction:
“John Seely Brown… notes that when established experts first consider the effects of new information technologies and the cultural transformations they produce, they typically do so from within the cultural constraints of their established professional paradigm … We were no exception. Our findings were so unexpected that we were forced to consider alternative points of view… But as Brown discovered, ‘Really substantive innovations – the phone, the copier, the car, the PC, the Internet – drastically alter social practices.'”
The authors – mostly doctors, remember – said “Our most helpful insights came from a growing awareness that e-patients use the Internet in three fundamentally different ways: to access content, connect with others, and collaborate with others in ways never possible before.”
See what I mean about how this had strong echos for me? They continue:
… many who have attempted to study or explain e-patients and many leaders in medical reform have overlooked, ignored, downplayed or even actively opposed some of the most innovative developments in modern medicine.
Presenting their findings, they said “We modestly suggest that the tentative conclusions below are no more ‘anti-doctor’ or ‘anti-medicine’ than the conclusions of Copernicus and Galileo were ‘anti-astronomer.'” The preliminary conclusions:
1. e-patients have become valuable contributors, and providers should recognize them as such.
“When clinicians acknowledge and support their patients’ role in self-management … they exhibit fewer symptoms, demonstrate better outcomes, and require less professional care.”
2. The art of empowering patients is trickier than we thought.
“We now know that empowering patients requires a change in their level of engagement, and in the absence of such changes, clinician-provided [information] has few, if any, positive effects.”
3. We have underestimated patients’ ability to provide useful online resources.
Fabulous story of the “best of the best” web sites for mental health, as determined by a doctor in that field, without knowing who runs them. Of the sixteen sites, it turned out that 10 were produced by patients, 5 by professionals, and 1 by a bunch of artists and researchers at Xerox PARC!
4. We have overestimated the hazards of imperfect online health information.
This one’s an eye-opener: in four years of looking for “death by googling,” even with a fifty-euro bounty for each reported death(!), researchers found only one possible case.
- “[But] the Institute of Medicine estimates the number of hospital deaths due to medical errors at 44,000 to 98,000 annually” … [and other researchers suggest more than twice as many]
- We can only conclude, tentatively, that adopting the traditional passive patient role … may be considerably more dangerous than attempting to learn about one’s medical condition on the Internet.” (emphasis added)
5. Whenever possible, healthcare should take place on the patient’s turf. (Don’t create a new platform they have to visit – take yourself wherever they’re already meeting online.)
6. Clinicians can no longer go it alone.
- Another eye-popper: “Over the past century, medical information has increased exponentially … but the capacity of the human brain has not. As Donald Lindberg, director of the National Library of Medicine, explains ‘If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.”
- In contrast, when you or I have a desperate medical condition, we have all the time in the world to go deep and do every bit of research we can get our hands on. Think about that. What you expect of your doctor may shift – same for your interest in “participatory medicine.”
7. The most effective way to improve healthcare is to make it more collaborative.
“We cannot simply replace the old physician-centered model with a new patient-centered model… We must develop a new collaborative model that draws on the strengths of both systems. In the chapters that follow, we offer more suggestions on how we might accomplish this.”
Great stuff! An awakening for all players in the “ecosystem,” as we say in the business world: patients, providers, equipment developers, everyone.
Wake up to the new world of participatory medicine: equip, enable and empower patient participation.
Great post, Dave. Thanks for bringing the enlightened, articulate, indefatiguable patient perspective to the ePatient group.
Really nice piece, Dave. Compare your synopsis with discussion on thcb on polar views of medical home….
http://www.thehealthcareblog.com/the_health_care_blog/2009/01/the-virtual-health-home.html#more
Then compare with this clip from NBC news on Duke’s attempts to find out reasons behind ER use http://www.blinkx.com/videos/Duke+University
Great Post Dave,
I love the way you have distilled the findings of that industry changing white paper into direct an helpful line items. Keep up the good work.
This post’s ears must have been burning today because I talked so much about it. :)
I spoke today with my primary physician, e-patient colleague Danny Sands, at the 25th annual TEPR conference. We were the closing keynote of the first morning, just before lunch. More to come later about it.
Great article, Dave. It’s hitting home a lot right now since both my brother and father are sick, and I’ve been butting heads with my aunt and both of them over my wanting to ask questions of the doctors about information I’ve found online, while they and even a particularly well-informed patient/advocate friend of mine are all trying to tell me why I should just shut up and assume that the doctors all know what they’re doing and that they’ve considered every option already.
And I’ve *got* a medical background, as well as access to all the medical literature.
There are some great videos on the topic of medical informatics at http://clinicalinformatics.stanford.edu/scci_seminars/2004-05.html, and especially one entitled “Whose Health Is It Anyway? How IT Can Transform Patient Care” at http://clinicalinformatics.stanford.edu/scci_seminars/05_06_05.html
Eeek, I just realized that the second link I posted is a lecture by your own doctor who you just mentioned!
I should have figured you’d be involved with him somehow .
Hahahahaha, Wendy – I didn’t know about that online video! Time to blog about it!
Seriously, thanks for passing this along. It may take a decade for people to realize that we can’t even ASK docs to be know-everythings anymore – the “400 years” part still sticks in my mind, and that’s not some allegedly wacko patient advocate talking, it’s the head of the National Library of Medicine. Holy cow.
I know, though, that some people don’t want to hear about it. At some point I feel that I have to let go and let them have their way. But I do make a point of ensuring that they’ve at least heard that they have a choice.
Good post. Another good use of the internet is for email communications, to exchage information, between patients and physicians. Needs to be private and secure though, to satisfy regulations. An example is http://www.housedoc.us, which is free and easy to use.
That 400 years bit blew my mind as well, Dave. Good lord. I knew there was an excess of information out there, but that is incredible.
It brought home even more how important it is for people to be their own advocates – or to at least have one with them when they’re in the hospital.
People really do need to know that they *can* make a big difference in their own healthcare, even if they’ve got top flight doctors.
Keep up the great work, my friend.
Great summary — Project HealthDesign, a national program of the Robert Wood Johnson Foundation’s Pioneer Portfolio — is tackling some of these same challenges. Focusing on a new vision for next-generation PHR systems, in its first phase, the program supported grantee teams to design prototype IT applications tailored to help consumers with specific health goals or conditions and that could run on a common platform. Now they are looking more intensively at how patients can harness data related to everyday health observations — exercise, nutrition, pain, sleep, etc. — and how clinicians can meaningfully and effectively factor such info. in to mainstream care processes.
The program is actively seeking input on the best ways to go about this, and will release a CFP later this spring. We’d love thoughts from you and your readers — you can find out more at http://projecthealthdesign.typepad.com/project_health_design/2009/02/going-forward-with-project-healthdesign-wed-like-your-input.html. To sign up for CFP alerts, visit http://www.rwjf.org/services/.
-Susan Promislo
Communications Officer, Pioneer Portfolio
Robert Wood Johnson Foundation
Wonderful to hear from you, Susan.
For those who don’t know, the Robert Wood Johnson Foundation was a key factor in sponsoring Doc Tom Ferguson’s work in creating the white paper. The entire participatory medicine movement owes a vote of thanks to RWJF.
Looking forward to greater participation in the new project, too….but this week I’m swamped because besides my day job, I’m chairman of my barbershop chapter’s Singing Valentines program. What a hoot THAT is! Nothing like a barbershop quartet showing up in tuxes, singing a love song to the victim, handing over a Polaroid and a rose, and skedaddling. :) http://www.SingingValentines.com. (They have ladies’ quartets, too.) Ambushes available for the office, restaurant, home, etc.
Susan,
we have written here about the wonderful initiative you are sponsoring. In particular the addition of the ODLs in the PHR is, I believe, an innovative and important addition. See Have you ever heard of ODL? and Observations of Daily Living and Personal Health Records. I guess you can call us early adopters.
I will be delighted to help in any way I can.
As the primary caregiver for my 80-year-old father, I searched in vain for an online service that would help me manage his health care. The chapter “Why Personal Online Health Networks Have Received So Little Attention” addresses this very issue.
To help my father, and other’s like him, I founded http://www.rememberitnow.com. RememberItNow! is an online private care community service, very similar to the one imagined in this paper. Caregivers can set and send medication reminders, share responsibilities, keep a health journal, track wellness, organize contacts, bookmark websites, schedule care and more.
Pam, that’s a great-looking service! I’ll look into it later today.
btw, does it exchange data in any way with other systems like Google Health and Microsoft HealthVault?
Interesting blog! Is your theme custom made or did you download it from somewhere? A theme like yours with a few simple adjustements would really make my blog stand out. Please let me know where you got your design. Thank you