In this case, the doctor picked up one of our classic posts, the Seven Preliminary Conclusions from the e-patient white paper, which was written before I’d ever heard the word “e-patient.” As we approach the October launch of the Journal of Participatory Medicine, I re-read that post and found renewed meaning. Here it is.

The e-patient white paper:
 
Seven Preliminary Conclusions

Originally published January 27, 2009

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.

______

You can join the Society for Participatory Medicine. It’s only $30 for individuals, with scholarships available on request for people in hardship, and there are four levels of organization membership.

We spent a bundle of money on making this a random sample of the U.S. population, but guess who got a call on his cell phone? None other than e-patient Dave! He had never talked with me about the survey questions or reviewed a draft, so I decided to keep his interview in the mix, but he surprised the heck out of the interviewer when he finished the sponsor identification for her at the end.

It’s a long report, so here is a cheat sheet.

Comfort food

This survey once again establishes that 83% of internet users (61% of adults) in the U.S. look online for health information (I call these people “e-patients”). That tracks with every other survey conducted in the last few years – ours and others – so it’s just comfort food for data geeks.

Is Health 2.0 hip or hype?

Hip. There is significant uptake for Health 2.0-type activities online: 59% of e-patients have consulted blog comments, hospital reviews, doctor reviews, and podcasts. 20% of e-patients have posted comments, reviews, photos, audio, video or tags related to health care. People are tailoring their online information-gathering, targeting “just-in-time someone-like-me” health info and doing some sharing, too, especially young people (18-49 years old) and those with mobile internet access.

Anything in here for Information Therapy fans?

The primary relationships in health care are institutions which, in the words of John Seely Brown and Paul Duguid “will not budge” (hat tip to their book, The Social Life of Information, which was one of Tom Ferguson’s must-reads).

When asked, “Now thinking about all the sources you turn to when you need information or assistance in dealing with health or medical issues, please tell me if you use any of the following sources…”
• 86% of all adults ask a health professional, such as a doctor.
• 68% of all adults ask a friend or family member.
• 57% of all adults use the internet.
• 54% use books or other printed reference material.
• 33% contact their insurance provider.
• 5% use another source not mentioned in the list.

You read that right: The internet is tied in third place with books! Vive l’impremerie!

The good news: They like you! They really, really like you!

60% of e-patients (42% of all adults) say they or someone they know has been helped by following medical advice or health information found on the internet. That’s up from 2006 when 31% of e-patients (25% of all adults) said that. Just 3% of e-patients say they or someone they know has been harmed by following medical advice or health information found on the internet, a number that has remained stable since 2006.

The bad news: We don’t have full participation

Only 25% of adults with less than a high school education go online for health information, compared with 50% of high school grads, and 85% of college grads. 27% of adults age 65+ are e-patients, compared with 59% of adults age 50-64, and about seven in ten adults age 18-49. 44% of Latino adults go online for health information, compared with 51% of African Americans and 65% of whites.

Further, two-thirds of e-patients ages 18-49 have done at least one of the Health 2.0-type activities listed, compared with one-half of e-patients age 50 and older. There are no significant differences when it comes to education – those with less education who engage in any health activity are just as likely as other e-patient to post and read comments, reviews, etc. Same goes for race and ethnicity.

Shout-outs to special interests

Mobile health fans: You’re the big winner here. We did statistical regressions and indeed mobile access is a significant, independent factor in health social media participation.

Facebook/MySpace/Twitter fans: You’re the big loser in this survey. There is very little evidence that social networks have become e-patient hang-outs. Health orgs may want to spend their resources elsewhere for now: just 6% of e-patients who use social network sites started or joined a health-related group.

Health publishers: The market for comments, ratings, and tags is ripening. If you’re not opening up to user-generated input, start thinking about it. Your audience is waiting.

Health professionals: Judgment Day is approaching and only a tiny slice of your patients are on the review committee. 35% of adults have looked online for information about doctors or other health professionals and, of those, one-third have consulted online rankings or reviews and only 7% of that group has posted a review!

Hospital administrators: 28% of adults go online in search of information about hospitals or medical facilities and, of those, 45% have consulted online rankings or reviews and only 9% of that group has posted a review.

VCs: There is steady and increasing interest in health: flip to the back to see which topics are hot, like fitness info which saw an an 88% growth since ‘02, a more rapid increase than any other health topic covered in the survey. But know this: few people do this stuff every day or even every week.

Pharma: 33% of adults have looked online for information about prescription or OTC drugs. What’s interesting is that people who look up drug info are not likely to also look at alternative or experimental treatments – your customers are pretty focused.

E-patients and caregivers: Contribute! People are listening.

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.