When physicians are ready to promote patient empowerment / engagement, what do we want them to do?

This question was posed to me by Ann Barber, MD, who I just spoke with. Ann reached out to me because she has been following the work of the group at e-patients.net, and specifically their call to recruit physicians to support the patient empowerment movement. Ann is an internist who specializes in hospital medicine, and has recently relocated to New York.

Ann asked me the question in the title of this post, and in talking with her, I decided to ask it here as well, because I’m unsure of the answer.

I wondered if this is because I/we have assumed that the majority of physicians are not interested in empowering patients, and therefore we don’t know how to support those that are?

I did a mini-check in with myself on this, and although I have alluded to some physician groups still feeling challenged by the idea of patient empowerment on this blog, the majority of my writing here points to the idea that physicians are very interested in empowering patients, because they want to perform well for them. The overwhelming majority of my posts here point to that idea, and here’s just one example.

Back to the question – where should a physician start when they have the energy and drive to make a difference in this area? When they interview for positions, what vocabulary should they use to describe what they are looking to do? How do they find the institutions in their communities that are already forging ahead in this area? If there are no institutions identified, how do they find the ones that are open to new ideas/thinking in this area?

My suggestion was to walk the hallways of any potential medical center employer and observe and ask questions – how are patients and families involved in their care? Do nurses and doctors round at the bedside (like they do at Medical College of Georgia, and hospitals in the Kaiser Permanente system [article in Harvard Business Review describes this] )? Are there visiting hours? How does the institution keep families and informed throughout a hospital stay?

I recommended a few resources, including the Wachter’s World Blog, written by hospitalist expert Bob Wachter, MD, the Institute for Family Centered Care, to find institutions in a community that are practicing patient and family centered care in New York, and of course, HelloHealth in Wlliamsburg.

I think the inpatient setting is the next frontier of patient and family involvement in their care, enabled by technology, and welcome the creativity of Ann and other hospital medicine specialists who want to make a difference for patients and famlies everywhere, which is why I wanted to think about this more.

Are there other ideas for Ann and the physicians in our profession who are among the “already recruited?”, in New York (and beyond)? Post them in the comments, please!

And thanks to e-patients and all the patients who have made it easy to remember who I am accountable to.


Hi Ted,

Your suggestions are all spot on. The two things that I would add that should be done are:

*Involve the patient in shared decision-making.

*Make sure that patients get the care they need and no less; the care they want and no more.

Thanks, Betty, and agreed!

Thank you also Lodewijk – I am very glad that you're convinced! And that with a blog, we can un-patronize what comes across to you as patronizing. I read your article and I am flattered to be mentioned in it. I actually changed the reference to this being the "Eytan definition" (through the magic of Wikis) on the top of HealthCampDC home page to one that is more accurate/inclusive of those who shaped it and is different from the one you cited, and I think closer to the one in your article – this is good news!

With that in mind, help me (and Ann) out – how would you say things differently, or let me know what you interpreted the statement to mean. In the Web 2 world, sometimes our thoughts race faster than our fingers and we are already on to the next blog post. That's why I like its self-correcting nature,


Ted, the "patronizing" aspect is in the word "for". Would you have written: "because they want to perform well for them in active cooperation with them" or something in that sense, it would have been much more towards what I think patient empowerment is all about.

I noticed the difference between your "original" definition and the Barcamp one; what intrigues me is that you seem to focus on "active" reshaping of healthcare as a goal, whereas I think that healthcare will change as the natural and logical consequence of patient participation, i.e. patient empowerment.

Dear Lodewijk,

Thanks for taking the time to add your insights..I want to clarify though that "I" am not the focuser of the definition. I was simply the clerk of the crowdsourcing (borrowing a thought from "A Fortunate Man").

And…at the risk of creating a comment storm, I want to get additional input on the aspect of patronage/izing from others. Thoughts from the readers?

Appreciate your efforts and the work to describe this better,


Man, I can't leave you unwatched for 2 days without you starting something I want to play in.

I wonder how many here have read the e-patient white paper, which is at the core of the e-patient blog's work that you (delightfully) cite. 🙂 For those who don't want the whole 126 pages, I synopsized it here and after. Check it out, for heaven's sake! 🙂

But I see that we (the EP group) still haven't spelled out the "Okay, where do I start," either for patients or for providers – never mind for those who design processes. This is a good game.

Re the patient's view of it, I started on a related tack this week – I had occasion to recall how the e-patient principles struck me when I first heard them in January. I dug out my notes from my first meeting with that group; I'll be posting them this weekend.

One aspect that all parties can start with is that patients have much more ability to contribute than we used to think. Once that sinks in, a host of other things open up. Greater respect flows naturally, as does asking the patient and family what they'd like, as Betty suggests.

I implore people to at least start by reading the short synopsis of Chapter 2. Or, go nuts 🙂 and read the chapter's wiki.

The chapter lists seven preliminary findings from Doc Tom's perspectives, which reportedly took root as far back as 1975. (See the Ferguson tab here on cnn.com.)

Hey Dave,

Chapter 2 is a great call to action! In a way, finding that place in the world as a physician in (name your city) where you can support Health 2 is much like finding a doctor – word of mouth. There's really no specialty society called "American Academy of Participatory Medicine." Or is there? Or should we create one? Virtually? With its first brunch in DC this year?

Jen are you listening?

I may network some around this at Health 2.0,


NOW you're talkin!

There's been some discussion of this in the back room at e-patients. Gilles Frydman, I know, is interested in advancing the cause. I'll see if I can stir up some discussion.

If you guys have a brunch in DC somebody damn well better make sure I can be there. I'm gettin tired not knowing these faces! <wink> (Not to mention missing out on creating the future.)

I should note, btw, that the same "Where do I start" question arises for the newly diagnosed and their families. (One might say that it "should" arise earlier, but it does arise when the need arises.)

I started working on the answer in April and May with a Beginner's Guide to Participatory Medicine, part 1 and part 2. Never finished it. I'm game – let's start building. (I'm open to partners!)

Yes, both a Journal of Participatory Medicine and a Society are on their way. The Journal will be the publication of the Society. Let's talk at Health 2.0.


Alan / Dave,

Terrific, and it will be great to see you. It was worth the effort to arrive to the place where there will be a place for people to convene and "get started."

Dave, there's rumor in the Twitterverse of a DC Tech Brunch coming up in November, we're going to do some networking around this, of course you are invited,


Let's make sure the Society is damned active and easy for docs to find and full of action-ready advice! Last thing I need is a progressively-minded bureaucracy that thinks and never gets anything done.

We talked about all this 8 months ago and very little (if anything) has been built. That's ludicrous, in the age of e. Let's get people involved who can do some building.

It needs a modern, easily updated participatory e-platform (Ning comes to mind as a simple starter), and it needs vigorous support by people who are actively involved. Engaged, equipped, and enabled, dare I say. And in action.

I'm serious about this. People are DYING for lack of this information, not to mention the people who "merely" suffer. Meanwhile plans are being made to invest billions in new systems. We must not let more years go by without this message being front and center!

One important note: The Journal of Participatory Medicine will of course be an Open Access publication for peer-reviewed articles.

The time has come to treat the multiple developments that the internet connectivity have brought to the modern world of medicine with a little more scientific clarity. I think the Journal may be one of the tools necessary to bring that change.

I'd like to reiterate Alan's call but make it more e-patient centric: if you are an empowered patient or you are empowering patients with one the many incredible internet resources that you have created we would love to have you participate in either the Journal, the Society or preferably both.


when you write "we talked about all this 8 months ago and very little (if anything) has been built. That’s ludicrous, in the age of e. Let’s get people involved who can do some building." I am sorry to say that you are badly mistaken. Lots of work has been done and the journal will have a fantastic opportunity to reach many doctors from the beginning.

I understand your frustration but building a peer-reviewed publication is VERY different from starting a blog. I mean, it is very easy to start an open access journal that will never be read by anyone. But starting a publication with a large audience is a whole different ballgame. Just have a little more patience, I think you'll be satisfied with the result.

> building a peer-reviewed publication

I wasn't talking about that, I was talking about getting something in existence so people like Ann Barber don't have to keep asking that question.

> have a little more patience

See above.

Have any discussions about the Academy Ted proposes been happening out in the open? Not that I'm aware of. Let's do it.

And regardless of that, what's keeping us from answering Dr. Barber's question? Today? What have any of us published to address that?

What is a movement, without movement?


If you remember, when I proposed the creation of the Society of Participatory Medicine in February, there was very little support. I am thrilled that Ted is ready to move forward. I would suggest that we should all work together now to make it happen fast. Nothing could please me more than finding lots of MDs who want to make this happen yesterday. Because we all know that there can be no Participatory Medicine without participating MDs.

Ann Barber asked a great question. The Society should be the place where she would get answers. Because doctors need to have the question answered in a way that makes sense to doctors, something not always equivalent to making sense to us, the patient representatives.

Well good, let's get going!

One thing I'll say: if doctors require a Society before useful information can be published, it triple-underscores a major factor in why the profession sometimes gets its lunch eaten by empowered/equipped/enabled patients.

Not sure whether or not to put a grin after that. 🙂

Okay, I'm done with this.

Doctors are not the only professionals who need to get information from a professional society before they can easily accept it. Have you tried to sway an engineer with opinions gathered through the wisdom of crowds? The problem is much deeper than we would like it to be. It always comes back to how the internet connectivity, as a disruptive technology, is taking the idea of expertise upside down and making minced meat of it.

The Society, OTOH, should help us to keep our heads cool and not become guilty of a new form of tunnel vision, where we think that all problems can be fixed just because e-patients communicate as equals with their clinicians.

I am not yet done with this 🙂

If we replace "for" and "to" with "with" in many medical/care-based definitions and phrases we'd be "on" the right track together.

So: Physicians providing care "to" patients would be physicians providing care "with" patients who choose to be involved partners (and of course not all will, see 10-80-10 rule), but one can always dream, right guys?

Important word is "with" – players at either end of the care seesaw change (docs, nurses, patients, caregivers, etc).

Collaboration, conversation is ideal, rather than pure top-down, unilateral hierarchical delivery.

We need some horizontal bleed before we get closer to consumer-centric care.

Love Chapter 2 Dave – e-patients, social networks, bloggers, and docs et. al asking these questions online (and moving the conversations back offline) are helping get the pulse going faster.


It feels like something wonderful is about to happen – this is the dream group of commenters I would be honored to have on any post…and here you are :).

Societies can be a good thing, and the officialness makes it easy for physicians to have memberships paid for by their employers, which is a nice way for the health system to support this new way of relating for physcians and patients (and nurses, and all care providers).

I am excited to do this "with" all of you. I read your comments right after my experience with Anna today, and it was a powerful reminder of what and who we are doing this for. Always pleased to be a fellow force of nature with high expectations for myself/ourselves,


A Society of Participatory Medicine would be a fantastic initiative. Unfortunately, due to my still ongoing recovery from NHL, I can't be at the Health 2.0 Event, but do keep me informed and if possible, let me be involved!!

Lodewijk Bos

Dear Lodewijk,

I for one would be honored to be involved with you. We must remember to blog and tweet with additional frequency next week so you can stay abreast of things. Be well,


Ted and all,

Many thanks for your encouragement and ideas. After talking with prospective employers about e-patient, I have concluded that the next step we need to do is to describe how e-patient can become financially profitable.

Perpetually short of time, doctors worry that listening to the patient and sharing decision-making is too slow. My colleagues wonder, how do you see 20 patients a day, if you have long discussions with each? In my experience, talking to patients improves care tremendously and patients are always very respectful of my time. We have a thousand ways to keep communications short. Now, we need to learn how to listen and share decision-making in a reasonable amount of time.

When I donated blood last month, the Red Cross interviewed me by sitting me at a computer alone, where I answered sensitive questions about HIV, sex and all. The nurse there told me that patients are more honest when talking with a computer versus being interviewed by the nurse. This is consistent with my reading; studies show that people are more honest with the comptuer.

The US government is trying to force doctors to use computers. Still, most doctors keep hand-written charts. Would it be possible for e-patient to collaborate with e-clinician or another vendor to make computer-based patient histories part of the electronic healthcare paradigm?

If we could find a way to make e-patient a cost-effective way to practice medicine, then it would have a larger following among my physician colleagues.

Thanks for your work to bring e-patient into our reality.


> Perpetually short of time, doctors worry that listening to the patient

> and sharing decision-making is too slow. My colleagues wonder,

> how do you see 20 patients a day, if you have long discussions

> with each?

Fabulous question! I have lots to say about this at another time, but for starters:

1) Are you familiar with the work of PCPCC.net? Some of their slides talk about how severely unworkable today's load is. (I recommend dynamite, not living more artfully in the shoebox.)

2) The point of the e-patient approach (at least as described in the e-patient white paper) is not at all about doctors listening more and talking more, it's about patients being actively engaged and being much more active in learning about their conditions outside the "fortress walls," if you will.

In my case my e-patient communities (though I didn't yet know the term) taught me far more than my physicians did. (And my physicians were tops.) More than once, I raise eyebrows when I asked focused and reasonably-informed questions.

Much more to say, but not now – hookey's over. 🙂

Dear Dave,

Thanks. Yes, I found PCPCC.net very interesting. Thanks for this lead. These companies — IBM, Merck, etc — describe a long-term vision, complete with payment recommendations, such as payment should "pay for … coordination of care." I like their vision.

Now, I'm looking for a way to implement e-patient today. Short of health care reform, is there a way to put e-patient into practice today? For instance, is e-patient impossible in the current pay structure? How can doctors and patients learn together as partners? A doctor knows medicine well. A patient knows his or her body well. Together, how can we build a shared understanding of the patient's condition?

Which Internet tools do we need to build this common understanding together? For instance, should patients automatically request copies of all of their test results? Should patients maintain a current list of their allergies and medications with a printout of potential drug-drug interactions for their particular drugs? Could an e-patient society facilitate such an exchange of information in a way that saves doctor time? For instance, could this society direct patients toward information sources that are respected by doctors worldwide, such as UpToDate.com? What do we need to build an e-patient healthcare system today?



What do you mean by "implement e-patient"?

Have you had a chance to read the white paper, or my synopses?

I'm entirely available to discuss this in whatever way works for you. This is a time of bold exploration and invention, and nothing could interest me more than finding out how to make it real.

Ted has my cell phone, or email me at epatientdave at comcast dot net.

btw, I know you partially answered my "what do you mean by 'implement'" question… the thing I want to explore is that about 2/3 (or more) of my view of e-patient is on the patient side. Health professionals mostly need to be receptive and supportive, in my view.

When I first read the white paper in January it blew my mind, what a Copernican shift it caused. Chapter 2 was the most impactful, with its "seven preliminary conclusions." Only within the past month has #7 really sunk in: the best 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."

So now, much to my astonishment, I'm going to stop flogging "patient-centered medicine" and shift to collaboration – or, as more senior members of the Working Group have been saying all year, participatory medicine.

An answer to one question: if I can view my test results online, why would I care about getting a paper copy?

But perhaps for people who don't have theirs online, as I've had for years at Beth Israel Deaconess, that's a higher priority.

It was invaluable to me, when I was cancerous last year, to give my password to medically knowledgeable friends & family so they could look at my data. It gave me a real sense of having a broader network of support. And if I understand correctly, there's a fair body of literature documenting that feeling supported is good for the immune system.

Ann, Dave, all,

I am thrown off by Ann's questions because I am so used to being asked the question by physicians, "How do I not engage in these activities?"

I think this means change is happening. And also that I've been thrown off by Ann's questions.

Ann, I think you've just done the most important thing which is ask questions, like "why? (are things the way they are) (can I not practice medicine the way my patients want me to)

Dave, thanks for stepping in with some guidance while I figure out what to do next….the idea of a Society sounds better and better every moment,


This amazing exchange is definitely the best proof why we MUST have a Society of Participatory Medicine. Just look at us and how difficult to even answer the simple (?) questions Ann has asked!

But even before we move to create the Society I would like all of us to do something VERY important. I have shamelessly used Ted and Susannah methodology and I wrote a post on e-patients.net to get an hopefully very active crowsourced definition of Participatory Medicine

Dear Ann,

Sorry for the somewhat late reply, different time zone here.

2 remarks.

1. Your question about the internet tools. That's why we so frantically promote the use of an integrated EHR (=EMR+PHR).

2. What about information on prescription? I thought I(x) had become more common in the US. I have been trying to get some awareness about it in Europe with the help of my friend Don Kemper, but not much result so far.


Dear Dave,

What do you think about NoMoreClipboard.com?

(I have no personal experience with this site)

This is a secure https site that is available now for patients to collect their medical history and their test results. The site seems to offer faxing of whichever information the patient selects that will be sent to any doctor or any hospital the patient identifies. In addition, the site offers for a fee one time visitation rights to any ER doc the patient selects.

Conversely, doctors who subscribe can sponsor their patients and thus wave those patient fees.


Dear Gilles,

In the interest of crowdsourcing, the site also allows the patient to give visitation rights to family, friends, or others whom the patient chooses.



btw, Ann, your comment to Gilles suggests that we may be talking about different types of crowdsourcing. I believe you're talking about sharing data that's visible online (as I did during my cancer, using my hospital's patient portal).

But also, I believe the term is used around here (in the Web 2.0 world) to describe having a "crowd" (not an ordained special group) generate the answer to something – in this case, a definition. That's how it's described (pretty roughly) on Wikipedia.

btw, thank you very much for being here and joining in. You've started something, which is good.

Ted Eytan, MD