I sometimes wonder whether we complicate things that are pretty simple, by assigning more labels and new terms to things that have perfectly good labels already.
For instance, I once thought I knew what “information therapy” meant. It meant a doctor or other healthcare professional “prescribed” certain information for you to read, so you could learn about your health or mental health condition. Before the Internet, therapists called this bibliotherapy, as it usually referred to reading a certain book on depression, anxiety or the like. “Information therapy” is a fine term and all (it must be, since there’s an entire nonprofit devoted to it), but a recent blog entry over at The Health Care Blog has made me rethink whether it brings any value to the conversation.
Words must mean something unique, or else they lose all value. Look at the way Facebook and other social networks have co-opted the ordinary-looking word, “friend.” Prior to 2000, a friend was someone you knew and trusted and nearly always someone you actually knew at one time face-to-face. With its co-opted use on social networks, a “friend” now means nothing. It means someone who may have some sort of nebulous connection to you — either an acquaintance, a business associated, or even a complete stranger. It might mean your best friend, or it might mean someone you once talked to at a conference. It might mean you know them presently, or it might mean you haven’t spoken to them (even online) for 10 years. Most social networks today don’t clearly delineate the nature of the relationship and its current status.
So when I read an entry entitled, “The Great Debates,” I suspect there’ll be a lot of intelligent discussion focused around how two different philosophies and approaches might be in conflict (and how to resolve such conflict as it arises).
But when reading the definition of what “information therapy” now is in our ever-connected, 24/7 world, I find myself scratching my head:
However, while both Health 2.0 and Ix are focused on improving patients’ participation in care, they tend to come from different backgrounds. Ix tends to be “prescribed” to the patient, often by a clinician (although system-triggered Ix and consumer-prescribed — either “self-prescribed” or recommended by a peer, caregiver, etc. is also part of the definition).
Once you go down the road of “self-prescribed information therapy,” we already have another word for that — it’s called “learning” and people have been doing it for centuries on their own. Indeed, one could argue that that is one of the core strengths of the Internet (and resources like Wikipedia) — it is the world’s largest learning vehicle. Want to become knowledgeable about fly fishing? Within two hours you can find and learn everything you ever wanted to know about fly fishing.
It gets even worse when we consider the ever-changing definition of “Health 2.0.” At one time, I believed it to mean specifically Web 2.0 tools (like blogging or condition tracking) that empowered patients. PatientsLikeMe.com, for instance, is a perfect example of a “Health 2.0” site. But apparently it’s larger than that:
Health 2.0 had its start with non-health care organizations delivering content, communities and tools to consumers online—often in the absence of the health care system paying much attention. Thousands of communities about every conceivable health condition exist online, hundreds of sophisticated tools have been developed for consumers and clinicians to use, and now the ability to create and store patient data online is becoming much more prevalent.
Well, gosh, those thousands of communities have been online beginning in the 1980s, pre-Web, and certainly pre-Health 2.0. Does that make every patient community a “Health 2.0” offering? Good news for ACOR, then, as they can now claim they were at the forefront of the Health 2.0 movement in the 1990s!
And Health 2.0 seems to now be about personal health records, too, something drkoop.com tried doing in 1999. It didn’t work then, and it’s not really showing much signs of life today either. As e-Patient Dave can tell you, the personal health record tools available today — and their connections to the electronic medical record — leave a lot to be desired.
I should know about this stuff, as I created some of the first patient tools on the Internet in the form of depression screening quizzes that allowed you to determine your depressive mood (and track it over time) in 1996. Yes, thirteen years ago we had patient empowerment tools online. We still call them what they actually are — screening tools and trackers.
I have no problem with new terms being invented to co-opt existing behaviors and ways of interacting online. But when “information therapy” morphs into simply learning and “Health 2.0” describes patient empowered communities that have been around for decades, it does start making me wonder whether these terms actually have much meaning behind them. And whether anything can be characterized as a “great debate” when the distance between the two sides seems almost non-existent (except perhaps on some technical or technicality level).
I think it’s great to encourage physicians and other health care and mental health professionals to “prescribe” information to their patients. Every professional should feel comfortable prescribing information to patients who need it, because as the Pew Internet & American Life Project tells us, patients are often seeking out the professional opinion of those they already trust. (Why turn to WebMD when you already have a doctor you know, respect and trust?) Not every patient will have the resources, skills or ability to become as “empowered” as some of us might like. And even an empowered patient needs a starting point — why not with a doc?
But let’s try and keep our terms and definitions more clear and concise, so everything doesn’t just morph into one big thing, which can mean anything to anyone who happens to be giving a talk on the subject. Words must mean something. Consumers don’t “prescribe” information to one another — they share their stories, recommendations, and experiences. To jam this set of behaviors into the information therapy model and call it “self-prescription” seems to me to be reaching. It confuses the model and the philosophy, and brings muddiness to what used to be a pretty clear concept.
Read the full entry: Health 2.0 Meets Ix–The Great Debates
The funny thing about all this, to me, is that ideas only seem to get these new labels (after years of the phenomenon being in hiding) when enough people in the half-asleep public start noticing what’s been around them for ages. With a waking startle, they go “Huh?? Whassat?” and some genius comes up with a new name for it and sells it to them. :–)
MIND you, Matthew/Indu/JoshNAll, I’m more than happy to be speaking at your event. Heh. And believe me, I intend to leave the audience with a stark awareness that they know more now than they did when they finished their breakfast.
p.s. Homework exercise for the month of April: come up with a new word for “neologism.”
John. You’re right and you’re wrong.
Yes there is a wide debate in the information therapy crowd about whether “self-prescription” is part of Ix. But it’s the “prescription” part that matters–the concept is that injecting relevant targeted information into the care or self care process is the important aspect.
And for sure Health 2.0 is a label attached to activities that have been going on for 10-20 years. But then again, the Internet was around for 20 years plus before anyone heard of it. What’s different is the scale of use, the public consciousness, and the ease of use provided by the new tools–that’s what’s making a real difference on a mass scale and why the health care system is paying attention.
Labels only matter when the help focus people’s understanding of relatively hard to define trends. I think both Ix and Health 2.0 do that.
In many ways, I agree that clear definitions are very important.
In fact, that is why the Center for Information Therapy has invested so much energy in developing formal definitions, which have been adopted by URAC for their disease management standards and integrated into the National Business Coalition on Health eValue8 purchaser RFI for health plans.
Moreover, that definition forms the core of the new proposed information prescription objective that has been proposed for HHS’s Healthy People 2020 objectives.
For more details and a broader explanation of the reasons for differing definitions, see today’s post on http://www.ixcenterblog.org.
Both, Ix and Health 2.0, are buzzwords and marketing terms (and both are registered trademarks) that mean nothing.
Some have said that Ix is trying to jump on the Health 2.0/Medicine 2.0 bandwagon by reframing “prescription” as “prescription including self-prescription” (which I agree is simply “learning”).
I don’t think Ix was originally conceptualized as “self-prescription”. Rather, Ix seemd to target the “intermediary”. To quote Don Kemper: “Without trust, people are highly reluctant to become serious users of a health Web site, presenting a problem for managed care organizations whose public image already suffers from a lack of public trust. Health plans can re-earn that trust by providing evidence-based Information Therapy programs that prescribe to their members the information they need to make decisions and avoid medical mistakes.” (Kemper D. Manag Care Q. 2001;9(1):9-18.). See http://bit.ly/NFbC7 http://bit.ly/VP61
Now in my view, Health 2.0 / Medicine 2.0 is almost the exact opposite, opening a new way to inform people and to inject trust – without a “trusted intermediary”, by harnessing peers, the wisdom of the crowds, etc., who are in many cases BYPASSING the trusted expect/authority/intermediary. I have called this apomediation (http://bit.ly/yRoXX http://bit.ly/6E5qL). In the apomediated environment, trust and credibility is earned not through authority and formal degrees, but through first-hand experience (“street cred”), etc.
@Matthew & @Joshua… Sorry, I just don’t get it. So you’re saying that all these years I’ve been providing information about depression after a person takes a depression screening quiz on my site, that’s been “Information therapy”?? Really, how is that different from “learning”?
When someone types in “depression symptoms” into Google, are they not looking for information/knowledge and “targeted to a moment in care and tailored to someone’s individual needs.” How is a Google search — any Google search — not inherently targeted toward meeting the individual needs of the information seeker?
I think that perhaps you can see why I’m struggling with the definition, because it’s a distinction without any meaning. When you turn “Google search” into “information therapy” (it’s inherently self-targeted and delivered exactly when a person needs it!) or my providing additional information about depression (“Learn more!”) as “information therapy,” the phrase has no unique meaning to me any longer.
When the information was “prescribed” by a health professional, at least I understand the phrase and focus of that movement.
@Matthew, I suppose you’re refining the definition of Health 2.0 with this, “What’s different is the scale of use, the public consciousness, and the ease of use provided by the new tools–that’s what’s making a real difference on a mass scale and why the health care system is paying attention.”
I think Gilles might argue with some of that, as there’s nothing easier for a person than to receive daily emails automatically to their inbox, no? It requires literally no action on the part of the user to keep up with the community. And since when has “a mass scale” been an important part of the definition? How many wikis outside of Wikipedia have a “mass scale” (answer: very few). And if forum software, as one example, weren’t easy to use, why would the largest communities online be based on forums and email (neither exactly Web 2.0 technology)?
@Gunther – I agree with much of your insights here.
@Gilles – Excellent points all around. I think that different communities have long held value to different people for meeting different needs. Health 2.0 tools/communities have, as Matthew correctly alluded to, reached a new contingent of folks not previously interested in these topics. I wonder why that is (ease of use? as suggested or something else…?) and it would be enlightening to see someone look into these trends in-depth.
ACOR was certainly NOT at the forefront of the Health 2.0 movement, because technology has never been the center of what we do. We are in awe with people, the users of our technological simple system (by design). We are great believers in the never-ending wisdom of crowds. That is much more to quantify than any technology but I believe it is also a much more disruptive element than almost any technology.
One of the debates should have been IMO, the vision and value of low-tech communities (like ACOR) vs. hi-tech communities (like PatientsLikeMe).
We have much to learn about the strengths and weaknesses of various software platforms and forms of social media. To me this sounds a lot more interesting than discussing the value of prescribing medical information, a total oxymoron as soon as you enter the realm of the long-tail.
Hopefully soon we will all agree that there are at least 2 parallels medical realms. The main one (in terms of number of patients and costs) which starts mostly as a perfect algorithm. It’s the famous medical world of the big chronic diseases. (Many thanks to David Kibbe for expressing this so well in a recent blog post).
Then the second one, where things are completely different. No algorithm. A world of darkness where patients have to become aware that most of the clinicians are half-blind and know very little. That is of course where systems like ACOR shine and save countless lives. That is also where the principle of Information Therapy falls completely flat.
Thinking that your general practitioner will provide you better information about testicular cancer than the very well organized patient-centered and patient-produced information sites like the TCRC (Testicular Cancer Resource Center http://tcrc.acor.org) is ABSURD! The doctor should just say “Go to TCRC” and be done with the Information Therapy portion of their encounter. And not be reimbursed for that wonderful piece of advice.
Thank you for this impassioned and fascinating discussion. As an “expert” e-patient (expert in the sense that I am a long-time and very active user of e-patient communities), my two cents are:
1. I agree with Gunther that the distinction between IX and Health 2.0 is very much about apomediation. Certainly, I can “learn” much about my condition with self-directed research. But I have a very different experience from either prescribed or self-prescribed “research” when I gain insight from the wisdom of my peers. There is almost no doctor who would every prescribe such content. Even “self-service” health information sites (from WebMD to PubMed) are not going to grant credibility to experiential data. It is only the patients themselves, who are simultaneously creating and benefitting from this information source, who seem to truly understand its unique nature, and how it differs from conventional learning or teaching.
2. With the utmost respect and affection for Gilles and ACOR, I believe technology CAN make a fundamental difference in the impact of e-patient sites. I don’t think it’s a question of ACOR versus Patientslikeme. The latter is brilliant, but it also has some significant barriers to entry as I understand it. However, I have experienced and observed for years how e-patients “struggle” to make low-tech systems more useful for themselves — creating profiles in their signature blocks, writing multi-page “how-to’s” on the best Boolean techniques for searching the archives. I feel that only a small percentage of the value and knowledge in e-patient communities is tapped because of these limitations. Even that small percentage is very significant — but I want more! I also want to empower what I believe to be the great majority of e-patients, who want to share their knowledge in some structured fashion, with the larger health care community.
To paraphrase Judy, I have the utmost respect and affection for everyone involved in this debate, but I also hear blades being sharpened as we get ready to meet in Boston in a few weeks. This is a GOOD thing, I think, for both conference buzz and for our understanding of the issues at hand.
I’ve always thought that the Achilles heel of the e-patients movement is that not everyone is ready to be empowered. Information Therapy seemed to be a good antidote for that problem, certainly until such time as everyone has broadband at home, a high level of health literacy and numeracy, and self-efficacy.
Terms and definitions matter, but I’m also excited about the opportunity to skip over my “broken-record memes” familiar to this sophisticated audience (the long tail is the key to any online health endeavor; not everyone’s online but many have second-degree access; Dr. Google is de facto second opinion in the U.S. but internet does not replace health pros or Dr. Mom) and get to the new stuff: Social media is the next cluetrain, so catch it while you can.
I’ve said it before and I’ll say it again (but with even better data to back it up): Don’t be the AMA circa 2001. Design for what could be. Recruit health professionals. Let e-patients lead. Go mobile.
Judy,
I think you misunderstood what I was trying to say. You’re too smart so I have improperly explained! So let me try again.
In my mind it is NEVER us vs. them! Never! It is always what is the optimal tool for this facet of the communication, data transfer, data analysis and subsequent further conversations. I think that ACOR is unique in its ability to foster the effect of serendipity, because it is so low tech and flexible as a result. I think that Patientslikeme is fantastic for certain aspects of what they do and that as with ACOR, from their amazing strengths derive their weaknesses. The debate would be useful to try to figure what should/could be studied so that we gain a better understanding of what should be the ultimate mashup to foster optimal care and scientific discovery. ACOR could be so much better if we incorporated these modern tools!
I agree with the structured vision. I am a firm proponent of a centralized structured reference site for patients and caregivers, for example. I think it could do wonders to surface important scientific an clinical information. I could go on and on … :-)
Speaking of health literacy, please read this NYTimes column by Pauline Chen, MD, and think about how “Jack” would have benefited from any of the concepts we are discussing:
“Do You Know What Your Doctor Is Talking About?”
http://www.nytimes.com/2009/04/02/health/02chen.html
A significant portion of American adults are just not that into this stuff (health, technology). See “The Mobile Difference” for proof of that: http://www.pewinternet.org/Reports/2009/5-The-Mobile-Difference–Typology.aspx
This is great! We need more debate to spice things up.
Conversation reminded me of a column I wrote for Chief Learning Officer magazine in 2003. Someone suggested the term “e-learning” was dead with much the same argument in this blog post. I acknowledged that Google is indeed the greatest e-learning app, and now I’d say greatest health app, but that language is critical even if only to achieve our goals with investors, gatekeepers, adopters, users. A rose by any other name would still smell as sweet, but if we called it ragweed spreading the mission might be tougher!
I argued then about e-learning, and argue now about Health 2.0, that the broadest possible definition will also be the most empowering.
My 2003 column is at:
http://www.clomedia.com/columnists/2003/June/206/index.php.
Josh,
since your blog didn’t seem to take my comment, I’ll reproduce it here, slightly improved:
Josh,
I think one of the issues is that we are still talking of medicine as if it was a unified world. But it is not! Ix is, I am sure, of great benefit to a large population in need for guidance for conditions where that information is easily available. But it is, IMO, of very doubtful value as soon as you deal with complex conditions, rare diseases and multimorbidities. Note that I would love to be proven wrong!
If you include the following advice as part of what you call Ix then we may well be in some agreement:-)
Hi Gilles! Your comment has been posted to our blog…there is a delay due to how we currently handle spam. To address a couple of themes that have come out of this discussion:
Well, yes, on the one hand, Ix is just about learning…and that is certainly a fair question to ask. However, a critical piece/dimension of Ix is that the information is delivered (or sought) at a time that assists the patient in the decision-making process. Whether the patient is determining if a particular test or treatment is appropriate for them – or they are working through the stages of behavior change to improve their diet and exercise habits – Ix is meant to support them every step of the way.
Although Ix, as was pointed out, has been trademarked by the Center for Information Therapy, I think it is important to remind people that the IxCenter is a 501©(3) non-profit. We’re not in this for the money, folks. The IxCenter has three very dedicated full-time staff. The blood, sweat, and tears we shed for Ix “profit” go to support the sustainability of the IxCenter. We passionately believe that everyone should have access to the information they need to make informed medical decisions and engage in positive behavior change.
Is this a no-brainer? Yes, agreed! If all patients were currently informed and motivated to live healthy lives – and the health care system was efficiently supporting and facilitating this – then yes, the idea of “information therapy” is pretty silly. Will we be celebrating when the day comes that the Center for Information Therapy goes “out of business”? Yes. That will mean we have successfully fulfilled our mission and can move on to tackle other important issues facing this country.
It’s important to remember that we are all on the same side here. We are trying to improve the US health care system and improve people’s health. It will take all of us, working together, to make this a reality.
@Cindy Throop – Agreed. So information is prescribed by a professional or a system at a time when it can be of most help to the individual’s health needs, disease or problem.
But nobody’s adequately addressed/explained the morphing of the Ix definition to include consumers sharing information with one another when they come together to discuss a health concern. How is that Ix therapy? Nobody’s answered that question, raised by Holt and Seidman in the original THCB post.
John,
At one of our past Ix conferences, we had a great panel tackling the question, “Who can prescribe Ix?” Legendary self-care guru, David Sobel of Kaiser Permanente, stood up from his seat on the panel, went to the microphone, said, “Anybody.” Then, sat down.
He did proceed to explain himself more. The point he tried to make is that: It depends on the circumstances. One of the other panelists was Steve Schneider, the Chief Medical Officer of Healthwise, who probably knows about as much about evidence-based secondary prevention recommendations as anyone. He said that, for years, he’d been encouraging his by-then-octogenarian mother to take a particular medication. She never did until one of her “layperson” octogenarian friends spoke of how it helped her.
I’ve tried to explain some more (including links to a number of related things by both the IxCenter and other organizations like the Foundation for Informed Medical Decision Making) on http://www.ixcenterblog.org today. I hope it helps.
But the best way to answer (or better yet, explore and debate) “that question raised by Holt and Seidman” is to come to the first-ever “Health 2.0 Meets Ix” Conference in Boston April 22-23 where many of the people who have been commenting in this thread (and several other e-patients.net founders) will be trading perspectives.
John, I actually agree with you a little, and think that (and although he can’t comment as he’s away net-less in china) Don Kemper might as well. In my mind the important part of Ix is the prescription and its inclusion in the care process. But I am NOT setting that definition.
For Health 2.0 I clearly am trying to set a definition, and from day 1 I have been completely clear about that fact that not all of this is new BUT that there’s enough changes in technology, scale and interest that it warrants a new definition or label.
And to Gunther’s point (concern), OF COURSE WE’RE MARKETING!! In the modern world, behavior gets changed, health gets improved and Presidents get elected by better marketing. This isn’t a bad (or good) thing. It’s how stuff gets done and how ideas become movements that actually mean something.
If you think that more patients and doctors using the internet to learn, discover each other and improve health care is a good thing, then we need to create vehicles like Ix, Health 2.0, e-Patients et al to catch the attention of the 90% of the health care and consumer world that doesn’t know about it.
And simple names, terms and slogans are very very effective.
Change? Yes we can!
Gilles, we are in violent agreement! Especially your observation: “The debate would be useful to try to figure what should/could be studied so that we gain a better understanding of what should be the ultimate mashup to foster optimal care and scientific discovery.”
I look forward to seeing you again in Boston!
Everyone, please note Josh’s comment from this morning, which had gotten stuck in our spam filter. (We’re hoping that won’t happen again… eesh.)
Getting back to basics
Interesting discussion.
John, I had to laugh. I had a therapist once who finally realized that I don’t absorb anything unless it’s in writing :) :)
I take your point about the blurring on meaning on a lot of thing. Getting back to basics, however: one thing we all agree on is that patients need to have easy ACCESS to their records before they can become at all educated.
This is basic to any ACOR dialogue. How can anyone discuss their situation intelligently, especially if they are not medical personnel, without something in writing.
This gets to another point: If the small physician sample on thcb is in any way representative, physicians HATE patient requests for information, records or further education — particularly if they did not think of it first.
The less prominent the patient, the greater the discomfort or retaliation from the “busy doctor.”
While agreeing in principle that patients should be able to access their records without an Act of Goddess, physician advocates/activists, tend to quickly “forget” as they pursue their various agendas. David Kibbe being a case in point. And it doesn’t even require all that IT funding, just willingness to let someone use the xerox.
I think this would be a fundamental point upon which the participants at your upcoming conference would agree. That it is like pulling teeth (still) says a lot about institutional culture in medicine.
Information therapy, Ix, Health 2.0, self-help groups, ACOR and a thousand other words and phrases are all centered around a common purpose which is to help people make better health decisions and to feel better about the decisions that they make.
It is this common purpose that brings us together. One of information therapy’s strengths (as I see it) is it’s ability to push out (or prescribe) evidence-based information to every patient or person at every moment in care. Another Ix strength is it’s potential to integrate that consumer information into the process of care. Those strenghs can help millions of people make better health decisions every day. And both are hard for Health 2.0 efforts to accomplish.
However, for many patients, Health 2.0 efforts, (again, as I see them) go beyond what Ix can provide in two important ways. First they can lead the evidence base by highlighting personal experiences that are not yet codified into medical guidelines. Equally important, by their ability to share personal stories they can provide comfort for the lonliness of illness–something that is quite difficult for Ix to accomplish on its own.
In either case, however, the ultimate purpose is the same. The hope for the Ix Meets Health 2.0 Conference is that we find increasing ways to blend the strengths of the two approaches to make an even bigger impact on the common mission.
I’ll hope to see you all in Boston.
While I appreciate the marketing promotion for the Health 2.0 conference on our blog, free information is much cheaper than conferences that reiterate the same points over and over again, year after year while offering little new ground to tread, no?
So my take-away from the responses is simply this — Ix is whatever we make it out to be, as is Health 2.0.
@Don, Sharing personal stories and sharing personal experiences is not nor has it ever been “Health 2.0” any more than writing a book for a Kindle is “Book 2.0.” Sharing personal stories/experiences is most definitely Health 1.0, as shown by the multitudes of online health communities online since the 1980s. Yes, the 1980s. C’mon folks, stop trying to convince us any of this is “new!” It’s not.
@Matthew Holt, you keep talking about how Health 2.0 has changed the ‘scale’ of what we’re talking about. Do you have any data to support that supposition, or is that just your opinion? Because, again, it just sounds like marketing-talk from someone who’s job it is to pound the Health 2.0 drum. I’ve looked, and I can’t find any data to support that somehow “Health 2.0” has actually helped reached more — different — people than if the term had never been coined.
In other words, hate to say it, but the emperor is a little clothes-challenged.
Do these technologies help people? Yes. But can’t we just call them what they are and stop morphing the definitions to be “all inclusive” to the point of meaninglessness? As I noted, a simple Google search under the current definition fits in fine with “self-prescription,” and Don is telling me that a mailing list for depression in 1989 fits the definition of Health 2.0. It’s no wonder healthcare needs fixing…
Don,
you wrote “Information therapy, Ix, Health 2.0, self-help groups, ACOR and a thousand other words and phrases are all centered around a common purpose which is to help people make better health decisions and to feel better about the decisions that they make.”
I have to respond because that is NOT what ACOR is centered around. ACOR provides simple tools and complex human interactions to promote the concept that people OWN their health, their body, the centralized tissue banks they finance and a growing amount of the best science advancing our understanding of their disease. The empowered patients really transform the power structure. Hence trying to put corporate labels around what they do will ultimately fail, in my very personal opinion.
We also show our users that in the 21st century they should approach medicine from the viewpoint of Verify First, Trust Later. This is really why ACOR has been so disruptive from the beginning since 1/2 million people or more have learned that if you suffer from an unusual condition
Too many repeaded stories of stories shoved around, not receiving the appropriate treatments, discouraged, often strongly, by their physicians to go learn about their medical problems on their own.
We also have too many stories of patients educating their doctors about some aspect of their disease. Anyone who has entered the cancer continuum that can easily be anyone of us) has a responsibility to become informed, INDEPENDENTLY from their physicians, about their condition. Their life can easily depend on this fact, that negates in many ways, the concept of Information Therapy as you have developed it over the years.
Of course, for the segment of healthcare where algorithmics can do wonders your concept of Information Therapy is a great public health tool. Trying to make the concept valid for the entire world of medicine will just diminish it power and generate strong disagreement from those of us who have witnessed the unencumbered growth of patient groups who were seriously dissed by almost all medical professionals until recently.
And tonight we have a perspective that supports Gilles’s view, coming from a completely different direction: a highly respected analyst of how and why businesses change.
(The connection may not be obvious. It’s this: both reject the assumption that the best path to success is to just do what the establishment says.)
Clayton Christensen of Harvard Business School is the author of the “disruptive innovation” concept. His new book applies his years of research to healthcare, and from what I’ve seen its reasoning is solid.
I haven’t plowed through the book but conveniently there’s an excerpt in Forbes.
It may be a little deep for people who don’t know his lingo and his thinking, but basically he says that the way things are organized today isn’t working (duh) and a key reason is that things aren’t organized around gettin’ the freakin’ job done, but are instead evolved out of processes designed for other purposes, which no longer serve the purpose. And we’ve got our heads stuck so far up our precedents that we can’t see daylight anymore. We keep trying to find our way out, and there isn’t one.
As some of us have started saying here, Christensen believes that the solution won’t come from making those entities less inefficient, it’ll come from basically ignoring them and building new solutions that ARE designed, from the ground up, to get the job done.
What a fascinating conversation. Addressing the patient-doctor aspect of Ix, I have always thought (and said on a previous Ix conference panel and to Josh)that using the term ‘prescription’ sounds, to my doctor ear, very one-way. I prescribe, you go do or read what I’ve ordered.
IMO, the information that the patient holds is as or more important than the information the clinician is ready to prescribe, so what we need is a conversation, back and forth, both learning, and better health actions result, that whole dialectic thing.
This is not something one can bill for, but it is the only type of ‘information therapy’ that works for me and my patients. Having good content to provide patients in the optimal context is a good thing, but it’s not therapy.
I look forward to Boston and learning more from the thoughtful folks above who have been looking at this long and hard.
I am getting a whiff of information therapy as being a means of placating patients and making them “feel better.” this is part of the problem, not the solution.
See, I’ll FEEL BETTER if I can verify a physician’s credentials independent of his colleagues reassuring me tha, “Dr. X is the best. Trust us” when they or their institution have made serious errors at all levels. I’ll FEEL BETTER when I have reports in hand so I can insure accountability.
Gilles is exactly right. It’s the people, not the technology. It is education and common sense. The goal of ACOR members is to stay alive, not feel better. Get me email and a xerox!
So let’s talk competence therapy versus information therapy.
I understand how a therapist could seek to alleviate a patient’s anxiety through information, but research itself is empowering, as is doctor respect.
Pediatric oncologists love to commission studies on parents’ ability (or inability) to cope with a cancer dx in their child. None, to my knowledge, has paid for a study of the role of standard institutional practices, including withholding of records and key information, in CREATING stress and anxiety. Check out the documentary on children’s cancer, “Lion in the House.” It’s eye opening
This is what is meant by bottom up remaking of practice.
What I find missing in the information therapy discussion (no matter what the most descriptive name) is its role in the patient-physician consultation.
Most patients I have talked to never discuss their “first opinion” from the Internet with their doctor nor mention the concerns raised by what they read. The reasons include feeling rushed, not knowing when and how to bring it up, not wanting the physician to feel threatened, and wanting to test the physician’s diagnosis or how up-to-date his or her knowledge is. Not having this discussion can undermine what should ideally be a trusting relationship.
Information therapy is the flip side of the coin. If a consultation includes a discussion of the Web sites a patient used, a physician can more easily “prescribe” with an understanding of the patient’s Internet behavior and preferences.
Many of the stories I have heard involve patients who didn’t disclose their “diagnosis” but then distrust the one they receive since they didn’t receive an explanation for why the other was not accurate, or who obsessively searching for answers including cures to diseases for which no cure is yet known. Information therapy needs to be part of a dialog to really help patients.
I present some of these stories and discussion about the role of the Internet in patient-physician consultations in a paper I presented at CHI 2009 at http://lisagualtieri.com/2009/02/16/the-doctor-as-the-second-opinion-and-the-internet-as-the-first/.
Hi Lisa – on Twitter you asked that I comment on your comment.
All I have to say is, for heaven’s sake, people, TELL your physician what you’re thinking!! You’re allowed!
Hi All,
I’m late to the party here, but all I can say is that this conversation thread makes my head spin.
Yes, it’s all about learning — either proactive patients finding and using H2.0 tools on their own, or Ix in which medical professionals encourage patients to learn important things about their conditions (hopefully taking advantage of H2.0 tools in the process).
@John Grohol – right. The labels are irrelevant. But in case you’re wondering if these more sophisticated “shared learning” tools (beyond email) really help people, have a look around here: http://www.diabeticconnect.com. 23,000 members and counting.
Every day we get people saying thing like this:
“I have learned more in the last 24 hours here than I have in a whole year from my doc.” – PatW
Amy,
that last sentence “I have learned more in the last 24 hours here than I have in a whole year from my doc.” is what we are collectively experiencing, daily, on the variety of patient-focused social networks we all manage. In a sense it only shows how so many doctors are so poorly prepared, if at all, to provide valuable information to the patients they treat.
If people were satisfied with the information they get from professionals you would not have 23,000 subscribers and the Kidney cancer list (not one of the big cancers) with 2,000 subscribers. This is all about shared knowledge, with whichever technology we provide.
Now, how do you reconcile the idea of shared knowledge, often via unstructured conversations, with the concept of Ix, remains a mystery.
Gilles,
I truely don’t understand the mystery. Last year people turned to our information over 120 million times. That included about 500,000 times in which they turned specifically to information about self-help groups–with links. I’d have to think that was a help to the self-helper/health 2.0 movement. It seems to me that both approaches are advancing the same objectives–better informed consumers.
Don,
Delighted to see you involved in this conversation! I want to keep some answers for the Boston conference:-)
Let’s just say that, IMO, Healthwise is very, very good at providing answers for many diseases and not as good for some others. And then there are some diseases where patients-produced information resources are clearly better than what you provide. To me that remains a mystery.
I think we’ve already discussed it, but if I’m not mistaken, there are no links to ACOR on any Healthwise document that relates to cancer. Is it because we do not fall into the category of evidence-based resources? If I’m mistaken, please accept my apology in advance.
So here is what I propose: since you say that last year alone there were 1/2 million queries about self-help groups, I suppose than more than a few had to do with self-help groups for cancer, which I would consider my area of expertise. Can you prepare for the Health 2.0/Ix conference the list of self-help groups that you link to on the various Healthwise pages that provide information on cancer? I’m sure we shall have an interesting conversation.
Hi Dave, loved the article. Heard about your website in little old New Zealand. I’ve added your site to my favourites list.
Keep up the great work.