Unless you’ve been offline since Wednesday, you know that Medpedia has gone into public beta. I have a concern about the reliability of their model, based on my personal experience and the self-education I’ve been doing for the past year. I want to lay out the concern, my reasons, and a proposal.
It was a year ago that I first learned of the e-patient white paper, E-Patients: How They Can Help Us Heal Healthcare (available free in PDF or wiki), which lays out the foundational thinking for what we’re now calling participatory medicine. The Wikipedia definition of the term includes this:
Participatory medicine is a phenomenon similar to citizen/network journalism where everyone, including the professionals and their target audiences, works in partnership to produce accurate, in-depth & current information items. It is not about patients or amateurs vs. professionals. Participatory medicine is, like all contemporary knowledge-building activities, a collaborative venture. Medical knowledge is a network.
In this context, I’ll lay out my concerns.
First, I understand the need for evidence and the need to filter out flaky assertions.
Second, I’ve often said that I’m grateful for doctors – I owe them my life. There’s no way I would have dreamed up the high-dosage Interleukin-2 treatment that saved me. Plus, that treatment was wickedly toxic when it was first tried, and at this writing my hospital (Beth Israel Deaconess in Boston) hasn’t had a death in 11 years. It was superb doctors and nurses who made that happen.
However, what patients need from an online resource is reliable information on topics where they’re not experts. (The same goes for non-expert clinicians, as you’ll see below.) And my experience is that it’s an error to presume that doctors inherently have the best answer.
(Note: I did not say doctors are wrong! Read carefully. I said that presumption would be erroneous.)
For one thing, there’s the issue cited by David Servan-Schreiber, MD, in his book Anticancer: A New Way of Life. (He’s no slouch; among other things he brought Doctors Without Borders to the US.) He twice developed glioblastoma (a brain tumor) and beat it with surgery, chemo and radiation. Researching how he could reduce his odds of another recurrence, he found many papers that his colleagues hadn’t seen – and among the colleagues he found an unconscious attitude: “If it were real, we’d have heard about it.”
This view is understandable, but there are two massive problems:
- There’s way too much information coming out for anyone to keep up. Donald Lindberge, 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.” (White paper, chapter 2, conclusion #6.)
- “The lethal lag time” (Chapter 5): Even after research has produced a firm new result, there’s a delay (“latency,” in Internet engineering terms) before the information reaches physicians’ hands in the real world. How long a delay? Two, three, up to five years. People die during that lag time – people whose lives might depend on that latent information.
And the thing is, while doctors face incessant pressure on their time, patients (and their suppporters) with a rare disease have all the time in the world to go deep in their search for the latest information.
Now, you (personally) might be considering these problems in the abstract – “How often does that happen? And besides, yeah, medicine is hard – people do die.” But if there’s one universal I’ve learned in my year of research, it’s this: people get radicalized when it gets personal. When it’s your life, your child, your mother, and they’re in peril, it matters whether the info you’re reading really is current, up-to-date, the best possible.
I’ll use my own condition (stage IV, Grade 4 renal cell carcinoma) as an example. For this disease, Interleukin is the only treatment that produces anything like a cure; any other treatment merely slows down its progression. Yet on my ACOR.org kidney cancer listserv we frequently encounter a new member whose local oncologist didn’t tell him/her that Interleukin even exists as a treatment, or might have mentioned it but discouraged it.
Why?
- Many patients say their doc gave them info that was years out of date. See, Interleukin doesn’t work for most patients; when I first researched it, different sites said the response rate was 7% or 13%. But my ACOR group told me it’s up to 20% – which my hospital confirmed. Today it’s up to 25% there – but patients whose lives are on the line are still being told it has too little chance of success to be worth the risk.
- Regarding the risk, those doctors often cite the treatment’s toxicity. In my Web research I’d read that the side effects are “often severe and rarely fatal.” What I did NOT read, anywhere, is that a specialist hospital doesn’t have deaths anymore. (Mine hasn’t had a death in 11 years.) Those hospitals have learned how to handle the toxicity; what a patient needs to hear is get yourself to a specialist hospital.
- But try finding that statement on any medical web site. And if you do, see if it’s expressed as directly as patients say it to each other.
- Worse, we keep hearing that patients at one major cancer center are routinely not even told Interleukin exists. Some people speculate it’s a competitive thing, because that center doesn’t offer Interleukin and another center across town does. How’s that for instilling trust in doctors as the authoritative source? (But regardless of the reason, we keep hearing it happens.)
- To return to the “when it gets personal” issue: if your mother’s life were at stake with this diagnosis, how would you feel if that option were not offered to you – for any reason? Wouldn’t you want to know every available option? I sure did.
The e-patient white paper has numerous other examples of cases where experts said one thing and patients took matters into their own hands and, through one method or another, developed solutions that beat what the experts said was possible.
My question is, what would Medpedia’s editors have done in each of those situations? And what would have been the outcome in any of those cases if patients had submitted edits reflecting what they’d learned, but the approved editors didn’t agree with the patient’s view?
Said differently, who will vet the vetters?
I have a suggestion, which arose Friday night in a Twitter discussion with a clinician from another country. (Ain’t social media great??) Among other things, she cited the good that Medpedia could do for doctors in remote areas, or GPs researching diseases they don’t often see. I love that! Especially for diseases like mine, where the most current life-saving info is changing rapidly.
So I propose:
- Patients and clinicians should be able to write comments on Medpedia articles, just as they can review books on Amazon or write letters to the editor of a medical journal. This would leverage the power of Web 2.0, just as it does on Amazon and countless other communities. And just as with blog comments, motivated participants could post as much new information as they want.
- Patients should be able to mark an article as being helpful or not, as on Amazon:
This would give the editors feedback on whether their lay readers found the resulting article useful. - Clinicians should be able to do the same, assessing the piece’s usefulness from a clinician’s perspective.
Articles would thus have publicly visible feedback to the editors, from both patients and clinicians. (See Amazon readers’ feedback on reviews of Servan-Schreiber’s book.) Both groups, clinicians and patients, would be able to add content of their own; and people in need could see which pieces others had found useful:
As shown in this example, reviewers (and probably clinicians and editors) would eventually gain their own reputations in the community as highly useful people. (This example happened to contain an Amazon “Top 100 Reviewer.”) Many Web 2.0 observers have noted that reputation has become a key factor in the success of sites like Amazon and eBay.
What do you think? Could an approach like this address the concerns I expressed above?
Some people have said it’s simply not viable for approvals to be limited to doctors, and others have conversely said it’s unrealistic to think patient feedback could be authoritative. Isn’t there room for participation, for mutual contribution?
Whatever approach you want, who will vet the vetters?
Well well, the linkback above to Kidney Cancer Bloggers caught ME by surprise! I’m on the fly so I’m not reading Andy’s post yet, but I wanted to give him a shout out. Nothing floats my boat more than an activist e-patient! Thanks for persisting on ACOR (and here) until I noticed you, Andy, and thanks for being another specimen of the world we’re creating!
I see almost everything through a data lens, so let me try to use what I know to benchmark Medpedia’s potential:
74% of US adults are online; 75% look for health info online; 47% use Wikipedia (see Pew Internet’s latest trends charts)
Most people looking for health info online start at a search engine (Pew Internet: Online Health Search 2006).
Comscore Media Metrix continues to show that Wikimedia, Everyday Health, and WebMD garner huge traffic.
Medpedia needs to either break into search engine results OR internet users need a reason to change their habits (ie, so far most haven’t been burned by erroneous info and they haven’t been convinced by any pro-MD marketing campaign to make a switch from the “good enough” solutions).
However, Pew Internet consistently finds (as does the National Cancer Institute, and the Center for Studying Health System Change) that when facing a serious health question, most adults turn to a health professional first. So there is still an opening for a MD-vetted information service.
The stakes are high for everyone — I hope this data helps to show that.
Susannah’s points are invaluable. Without the eyeballs, nobody’s going to care what you create. And if you start with a closed, walled-off garden to begin with in terms of contributors, you’re already starting at a disadvantage.
Wikipedia showed that shared knowledge can work (although it has since devolved into “Survival of the Edits”), but it takes the devotion of thousands of dedicated, altruistic people. Medpedia, although perhaps well-intentioned, is coming at health and medical knowledge from a distinctly 1.0 “docs know best” philosophy.
It’s fascinating to see that old-school philosophy be grafted on to a 2.0 tool and business model, in hopes of generating something new and different. I have my doubts, reading through the tripe listed currently for mental disorders (full of misinformation).
As one of the representatives of the dying club of web 1.0 applications, I cannot let John connect the medpedia site with any other web 1.0 patient-centered site:-) Seriously, the problem is just that the philosophy of the site is not at all in tune with the moment. It is surprising to find 2 names, usually associated with useful innovations, prominently featured with many of the stories generated lately for media consumption.
Here is my question to both Mitch Kapor and James Currier: How can 2 principals of Second Life see the power of open collaboration in SL and believe at the same time that leaving the control of medical knowledge in the hands of physicians will generate higher quality material than a truly open, peer-reviewed system?
Dave – well explained.
For naysayers, here’s a different way to look at it. I tend to think in metaphors because it puts everyone with a stake in the same place:
Suppose your car’s transmission is about to fall apart. Your long-time, benevolent, tried and true mechanic tells you it just can’t be fixed. It’s not worth it. Time to either buy a new transmission or to put the car out to pasture…
But, you have a real emotional tie to that car (you and your Grampa built it from the first bolt) so you want to fix it.
Your mechanic has given up because you can’t possibly pay him enough to do it. Or he doesn’t have the time or the right tools. It’s left up to YOU, because you have the most interest / biggest stake / emotional investment.
So where do you turn? If you turned to Car-pedia, and the only people who had posted there looked at the transmission world the way your mechanic does, with “standards” only, then how helpful would that be? You can get that anywhere.
But, if among the people who provided advice were other folks who had built transmissions alongside their grandfathers and they were posting tips and tidbits that worked for them, too (how to use an old razor strap to replace a belt?), then it benefits everyone:
1. You feel well served by Car-pedia, whether or not your car transmission ever sees the light of highway again.
2. Other people with failing transmissions benefit in the future from feedback, no matter who has posted it.
3. The collaboration has become win-win for all participants — the mechanics are learning things they’ve never had time to explore (who ever thought about using an old razor strap?) and car owners are better understanding their role and responsibility for improving the (dare I say it?) health of their own transmissions.
4. The total body of knowledge has grown for the world of transmissions… and word spreads to others who need their transmissions rebuilt, too.
Pretty soon you have a tool NO one can resist – not the mechanics, not the transmission owners, not the people who insure transmissions… it’s even bigger than the sum of its parts.
Get it now?
Trisha Torrey
Every Patient’s Advocate http://www.EveryPatientsAdvocate.com
Guide to Patient Empowerment http://patients.about.com
Hahahaha, Trisha, you’re a pip! Was that metaphor fresh for us, or a chestnut?
Doc Tom Ferguson may not have crossed paths with you, but you are certainly a fellow traveler on a parallel path. Welcome.
John G,
It would help clarify things if you could cite a couple of the tripe items. Not looking for lengthy discussions, just one-line bullet points, if you can.
Since I’m no expert on your domain, this is a perfect opportunity to illustrate how somebody could be seriously misled if nobody vets the vetters.
Also I got a note from a Medpedia person today pointing out the Discuss tab. What do you think? If this is like the Wikipedia “talk” pages, I know almost nobody uses them – do you have any thoughts on that? (Note, all: I have no opinion about this, I’m asking. I just want something that works as well as the proven Amazon and eBay models.)
Gilles, thank you for the brilliant use of “peer-reviewed.” I had forgotten that last year as I first woke up to the e-patient principles you and this team had pioneered, for a while I used this remark about the difference between journal articles and my ACOR community:
“I came to realize that I needed peer-reviewed information – information that had been reviewed by MY peers, the patients whose lives are on the line.”
Where to start… FIRST, this is an excellent discussion about the nature of “content” and who should create and assess it. However, there is a part of it that I’m finding disturbing.
Let’s go back to the statement that started the whole thing
“Participatory medicine is a phenomenon similar to citizen/network journalism where everyone, including the professionals and their target audiences, works in partnership to produce accurate, in-depth & current information items. It is not about patients or amateurs vs. professionals. Participatory medicine is, like all contemporary knowledge-building activities, a collaborative venture. Medical knowledge is a network.
Naturally, the conversation took off down the “content” road. BUT, this is NOT ONLY what participatory medicine is about, i.e. it’s not just about taking part in the creation of accurate information. As a patient I’d also like to participate in:
– choosing treatment in context of my own life and what’s important to me
– Choice of tools/methods for adhering to that treatment
– research into the illness
– data collection
– setting the agenda for research
– advocacy and education about illness
the list can go on and on. Those are just a few activities that beg for more participation and that need to be accepted by the people who believe they presently “own” them (Doctors, Nurses, Health Services Researchers, Epidemiologists, Molecular biologists. etc. etc). To concentrate on the the joint creation of content alone distracts us from the bigger picture.
Of course Participatory Medicine is not all about content. It is about care and what works and what doesn’t. In the real world. Not based on the supposedly unbiased scientific results published in old style peer-reviewed publications that have lost a lot of their luster lately.
I am ready to make a nice little story public. Hundreds of patients have been using a homemade antiangiogenic treatment for years, with incredible results for some of them.
The treatment, designed entirely by a layperson, is nonetheless based on a very deep analysis of the scientific litterature. This is the kind of story that would have Tom fired up and ready to reboot the system one more time! A patient group has actively transformed care without the interaction of clinical specialists, although clinical specialists have always been informed by their patients that they were using this treatment.
I liked the ideas Dave pushed so much that I’ve already implemented a rating/voting system on our Kidney Cancer Resource.
Each article/page now gives the reader the ability to rate it’s usefulness from 1 – 5 (1 being low, 5 being high), the user can also leave a message saying why they rated it the way they did.
A very simple example page you can view, it’s simply a link to this blog post from Dave:
http://www.kidneycancerresource.com/index.php/E-patients.net_23-Feb-08
Early days I know, and we’ll have to see if the software stands up after some real battle testing.
Social networking to me is a very powerful tool and we’re still in it’s infancy, feeling our way around what works and what doesn’t. It took me a while to figure out the value of facebook, but now I’ve hooked up with old school friends I haven’t seen in over 30 years, and the digital reunion has now turned into a physical one, that would never have happened without these tools. I have to admit I’m struggling with twitter but I’m sure I’ll get there.
Welcome Andy!
And thanks a lot for the RCC wiki you have created.
Rating is one of the keys to maximize the effects of social media. I’m sure your experiment will turn out to be interesting. Of course, there are many unanswered questions regarding the potential manipulation of the rating system. But offering the ability to rate these so called experts resources should be a priority for medpedia. Thank you for doing the work for them:-)
You were mentioning Twitter. Anybody interested to see how a true web 2.0 company keeps on developing its product should analyze how Twitter does it. Their core audience are the many developers who are producing a constant flux of new applications, using data from Twitter. Whenever a new request for a feature is made by a developer, an entry is made in a features site and the developer community votes on the potential value of the feature. The more votes, the faster the Twitter team comes with an implementation of the feature. A successful medpedia would have done exactly that!
I was thrilled to discover (shame on me for not knowing) that Andy (a member of my ACOR list) had already created a wiki for kidney cancer. And I have the broadest grin you can imagine at the news that he already implemented ratings.
To me this is the power and the glory of open tools like this: the barriers to entry for participation in this game are slighter than the annoying speed bumps in my condo neighborhood. : )
I’m exaggerating of course. But I keep remembering my experience when an earlier career, in typesetting machines, was disrupted by the advent of desktop publishing: they added features faster than we could plan a meeting to decide whether there was a risk. : )
Now, gentle readers, go back and read:
A Thousand Points of Pain
Disruption and the healthcare bubble
Medpedia is certainly not a “problem” in either of those ways – far from it. (It’s not part of the tangled knot, and it’s not part of the overpriced HC bubble.) My point is just that disruption is underway, and the time is right for patients to be discovering that we (and that includes YOU) can do a pretty decent job of creating tools that do what we want.
Up to a point, anyway. I still want my oncology team and my participatory-minded GP!
So, peoples, let’s just keep tellin’ ’em what we want. And where possible, let’s do it ourselves – no need to sit around wailin’ about stuff that doesn’t exist. I mean, are we Doc Tom’s “empowered, engaged, equipped and enabled” e-patients, or are we whiners, or what?
Dan,
> Naturally, the conversation took off down the “content” road.
> BUT, this is NOT ONLY what participatory medicine is about
But but but but, Medpedia’s *about* content, right?
I couldn’t agree more, though. I think you oughta grab what you just said and make it a post. It’s worthy of its own URL (and comments).
Andy, I confess that when I first clicked on your sample page with ratings feature, I didn’t get it. Because (as you said) all it contains is a link to this post, all I saw was the (copious) page frame material. I didn’t even notice the ratings picklist in the bottom right!
(Rats, I tried voting for myself twice, but your gadget caught that. I’ll have to go to work and do it.:))
Any way to move that rating thing to the top right? (I don’t know if that would be better – I’m just asking. Amazon seems to do fine with ratings at the bottom.)
After all of these great contributions, this comment may seem a little elementary.. but the thing that strikes me as the most important element here is that only “accredited” (MDs, PhDs, etc) professionals are allowed to contribute and edit pages. What about e-patients, advocates, etc – people who have learned so much about their diseases (and often times, know more than some physicians).
Shouldn’t other experts be allowed to contribute, too? If we are pushing towards more transparency and truly participatory medicine, let’s really go there!
Great post, Dave!
I can’t resist quoting (yes, again!) Diana Forsythe: “Whose assumptions and whose point of view are inscribed in the design of this tool?”
I hope that Medpedia’s founders are scanning the conversations happening here and elsewhere so they will understand if people don’t flock to a party they are not really invited to.
Susannah’s profound comment adds something to our definition of Participatory Medicine. Most online communities were created because of this lack of invitation, and so they created their own parties. Smart doctors of today and tomorrow will embrace these new engaged micro-experts and will simply understand that embracing them means more freedom to pursue their won expertise. We are all here to free knowledge. Any activity designed or acting to limit this freedom will fail.
Dave,
We ARE listening! Thank you very much for the well reasoned and presented suggestions in your blog post. We have those on our to-do list and will get to several of them as soon as possible. Thank you to all the e-Patients community who are making comments here. (Thank you also for the many years of promoting a powerful and positive vision about what the future of medicine can be. Not being from the medical world myself, I read up on Tom Ferguson after meeting with Dan Hoch in 2007, and now I’m glad to be aware of that history of the e-Patients community. Visionary.)
I’ve said it before and I’ll say it again: Medpedia is a long-term project, and it has been designed to evolve based on the constructive suggestions of the community. It can’t all be there at launch. I believe that together, with many feature iterations and evolutions to the rules of engagement, Medpedia will a comprehensive, up-to-date, and ever improving resource of medical knowledge that will be available to the world for free. Once that is on track there is so much more to do, as Dan Hoch points out. SO much more to do. That’s what’s exciting. But it can’t all be done at launch.
I want to make it clear you ARE being invited in. There are already several key features that anyone — whether medical professional, expert patient, or layperson – can use to engage. Anyone can create a profile. Anyone can create or join a Community of Interest to connect and debate (they are admittedly rudimentary today but will be improving in the coming months), and anyone can use the Suggest Changes feature on every Article page. Use these features vigorously.
I won’t always have time to post myself, but please know that we are reading and listening as much as we can. Please get involved on the site and strike up an email dialogue with us. We’ll do our best to engage. That has been our philosophy and design for this from the beginning.
James
Well well, James Currier himself! (Founder of Medpedia, for those who don’t know.) Thanks for stepping up, dude – great to see you here! (Seriously.)
I’m tickled to hear that Amazon-style commenting and reviewing is on the calendar! Please give serious thought, now, to the medical approval model. (Hint: it takes zero software development to decide that docs aren’t the only ones who can approve edits.)
:–)
Do think seriously about the already-existing consequences of that model, as noted by John Grohol above. (John, I’m leaning on you to dish up specifics now – we have a listening ear.)
Re getting involved there myself, I’m not opposed – I just honestly don’t have the bandwidth. (I say that because I don’t want y’all to construe my not being there as meaning anything.)
To be clear, James, it would be FINE with me if you could bend this thing into exactly what we need. (See Andy’s Kidney Cancer Resource wiki for one existing example.) But I will forever and always urge people to take responsibility themselves for getting their peers’ advice on the validity of medical information. There’s too much at stake. I’m sure you’ll understand.
Thanks again. Good to see you here.
Interesting tweet to start my day:
@pfanderson: @japanophile Frustrated @medpedia doesn’t allow participation from medical librarians, nurses, HC advocates such as pts on Cochrane groups
My impression is that it’s not correct to say “doesn’t allow participation.” They must be talking about this “who gets to say” issue. I’ll try to steer them here.
Thank You James for writing here.
I’m delighted to hear you are all listening to our varied comments.
I am not sure that I have any better understanding of how you plan to let expert patients, representatives of patient groups and other fine examples of the e-patients movement, write medical content on medpedia. Making suggestions is NOT the role that engaged, empowered & knowledgeable e-patients want. They want to be sitting at the table, as EQUALs, just as has been happening with the grantmaking process of the DOD for various types of cancer research for over 15 years!
Let me repeat what I have been screaming out loudly for the past few months: doctors are allowed to treat ANY patient, because they have received a board certification. In today’s world this should not happen. Many of the 1/2 million former and current members of the ACOR cancer online communities have been saved from potentially deadly mis-, inaccurate, or imprecise diagnosis and treatment plans, given by these non-expert doctors. The expert patients have saved many newcomers by telling them to run away and find real specialists.
Similarly, for the content in medpedia, board certification will not be a proof of quality. I would surmise that for most rare diseases, which medpedia will have to cver if you want to be recognized as one of the main sources of valid medical information, you would get much higher quality from the expert patients for that rare condition than from most board certified doctors who can, automatically, create an entry in medpedia.
Your model will work very well for all the conditions with large populations of patients and therefore large numbers of expert doctors. I expect it will fail when time comes to cover the thousands of medical conditions that are the long tail of medicine.
Please change your policy, from the start and allow expert patient representatives to create content, as equal partners. You will greatly benefit from this change. I can give you a good example. Go to http://leiomyosarcoma.info, an informational site for people with the rare cancer leiomyosarcoma. Created by and for patients, this site is the reference for that disease. Its content would be a great addition to medpedia. But your current rules would not allow it.
Gilles Frydman
Founder,
ACOR.org
Gilles, wonderfully put!..
James I’m also delighted that you’ve looked in on this discussion. I was about to email you a heads up but see you are already way ahead of me.
One thing I can say as a physician and having spoken to James over a year ago is that there is merit to an incremental approach. While I am not usually an incrementalist, my colleagues have worn me down. In order to get them to listen up, we need to get their attention. They like credentials (after all, here in Boston everyone has credentials and is director of something. I like to think of it as the Yurtle the Turtle syndrome). If the Medpedia team does this right, they will draw them in and show them the value of the patient commentary. The standing of patient input will rise and knowledge symmetry will prevail as the application “evolves”.
What a fabulous conversation. Indulge me in my own recent anecdote about the lifesaving wisdom of patients.
As a heavily pre-treated veteran of metastatic breast cancer, I’m closer than I’d like to be to running out of options. Despite several tissue biopsies that indicated Her2- status, I’d been convinced that the trajectory of my disease resembled Her2+ cancers. I learned of a blood test for Her2Neu in circulating tumor cells on the BCmets.org list, and convinced my onc to let me have the test. Positive results! She made me repeat the test once more, and I sent her a slew of articles (also found largely through links on BCMets) to help convince her it was worth trying.
Meanwhile, my cancer was galloping as I recovered from an internal radiation procedure to one lobe of my liver. I started Navelbine/Herceptin on January 25 and after 3 treatments, we estimate that my palpable tumors have shrunk by over 50%.
Both onc and patient were in tears last week. My onc is going to write me up and my one requirement is that she acknowledge that she/we learned about the test from empowered e-patients.
I wholeheartedly concur with Dave’s point that even the best doctors cannot keep up with the state-of-the-art, and with Gilles’ plea that patients be invited to submit content to Medpedia. However, if that latter is not in the offing, I believe that patients will simply find ways to create their own repositories of content. If we have Web 2.0 sites with Web 1.0 “mentalities,” I know we can transform visionary Web 1.0 sites (like ACOR) into Web 2.0 powerhouses of knowledge.
Hi, Gilles, Dave, Stacy, Susannah, all. :)
Gilles, brilliantly said – love your points. Dave, thanks for the invite and pointer over here.
Dave caught my first tweet, but there was a second one that is also relevant:
“@japanophile can’t see them developing an audience among general healthcare consumers unless they include them in dialog.”
I’ve been watching medpedia for months (although sporadically, since they weren’t doing a whole lot at the time). Their policies and approaches have shifted around. Initially they were more open, but there were significant questions from the field about how this would effect credibility.
For historical context on this check out the discussion and posts at David Rothman’s blog.
http://davidrothman.net/2008/01/25/medpedia/
http://davidrothman.net/2008/08/01/notes-on-medpedias-changes/
I am specifically referring to this bit.
“Medpedia’s Angela Simmons addressed this in the comments:
Anyone with medical and health knowledge is encouraged to apply to become a Contributor. It is not a requirement that you have medical credentials; however, it is important that you are passionate and knowledgeable about at least one topic related to medicine, health and the body.”
From the medpedia site:
“Users of the platform include physicians, consumers, medical and scientific journals, medical schools, research institutes, medical associations, hospitals, for-profit and non-profit organizations, expert patients, policy makers, students, non-professionals taking care of loved ones, individual medical professionals, scientists, etc.”
I saw these (skimming fast), was excited, and suggested to local management that the health sciences libraries support this effort (which is in part from my institution) by encouraging medical librarians who are doing outreach and working with patients to make collaboration in medpedia part of what we do. (This could veer off into another discussion, but I will save that for later.) Relevant to medpedia, I was told that medical librarians are not currently welcome, but that the idea will reserved for future consideration.
If you read further down on the medpedia About page, you’ll see this that confirms this.
“Only physicians and Ph.D.s are allowed to edit the Articles on Medpedia after they create an account and are approved as an Editor. Non-Editors can create an account and then suggest changes that must be approved by an Editor before going live on the site. To suggest changes, click the link “Suggest Changes” at the top of Article Pages.”
I see so many problems with this model I don’t even know where to begin.
1. What I already mentioned in my earlier tweet – if you want healthcare consumers to buy in to your product and use it, you really have to make them a BIG PART of the dialog – they have to be at the table. Why not include the expert patient members from the Cochrane Review teams, for example?
2. I love eMedicine. Brilliant. Docs writing for docs. Frankly speaking, docs do NOT do a good job writing for (or speaking with) patients. That is what the whole Plain Language movement is about.
3. In academic circles, docs are usually faculty. Faculty are rewarded for their *academic* peer-reviewed articles in scholarly publications. Faculty who achieve renown in writing “popular science” or “consumer health” are typically discredited to some extent, with peers questioning their ability to produce genuine academic products. This is all well documented in the literature, and worthy of discussion by people who are more expert on this topic than I. Not to even mention that there are real barriers to scientists and clinicians adopting social media, as was highlighted in the Nature Publishing Group seminar on what they called “Not-working”. The take home point here is that there are good reasons for the lead researchers in a topic to NOT want to write for the public about it, and I question the likelihood of getting docs to actually write these pieces. There needs to be a reward system beyond “oh, this is our way to get headlines this month.”
4. Last but not least, I don’t see patients adopting this as a source of information, at least not for a good while to come. I participated in 3 community meetings to feed information to the Obama healthcare transition team. I was surprised in EVERY meeting I attnended that suggestions and demands were made for the government to provide vetted quality healthcare information. It was a surprise to each group when I mentioned MedlinePlus, healthfinder.gov, and the consumer health sections of all the NIH sites. However, I have seen many commercials on TV for MedlinePlus, attended many health fairs in which these resources were promoted, taught classes in which I promote them myself, found flyers for them in doctor’s offices and waiting rooms. If these are a surprise to the general public, how is medpedia going to penetrate that market? IMHO, they *can’t* unless they intimately interweave the healthcare consumer into the content production model.
My two cents. Really, Susannah already said most of this with her brief post:
“I can’t resist quoting (yes, again!) Diana Forsythe: “Whose assumptions and whose point of view are inscribed in the design of this tool?”
I hope that Medpedia’s founders are scanning the conversations happening here and elsewhere so they will understand if people don’t flock to a party they are not really invited to.”
Bingo.
Judy,
You’ve given me goosebumps and choked me up! I am so thrilled for you! You go, girl!
Your story hits close to home. I’m one of those e-patients who used the web, despite the fact that the credentialed professionals INSISTED I was on the wrong track, using Web 1.0 in a 2.0 fashion in 2004.
What I proved was that I didn’t have the cancer I had been diagnosed with at all. In fact, I had NO cancer, and despite their predictions, I did not die within the next few months. Almost five years later, and never having had any form of treatment, I am, to their great surprise, still here.
Keep in mind, too, that if I had followed their recommendations and had undergone the chemo they insisted would buy me an extra year of time, then at the end I would have been declared of an incurable cancer. They would have been heros — even though they were wrong.
In 10 years, this conversation won’t be necessary. Participatory medicine will be the standard. But as e-Patient Dave, Gilles, Susannah and others have said here, it takes this kind of disruption to make it happen.
I can’t go into all the things wrong with the general article on Depression in Medpedia (there are many), but you can look at the psychotherapy treatment section which doesn’t include results showing psychotherapy can be effective even in severe depression; the lack of any balance in the ECT section (it’s a treatment of last resort because of the memory side effects); St. John’s wort section mentions only U.S. studies, not all the European peer-reviewed research showing its effectiveness (there was a well-known methodological flaw with the U.S. study cited, so it is rarely used as a valid criticism of this herb); and then this about causes:
“Research indicates that depressive illnesses are disorders of the brain.”
This contradicts the previous sentence which said that depression is a combination of biological, environmental and psychological factors. It’s a misnomer and stupidly simplistic to suggest depression is a “disorder of the brain.”
“Brain-imaging technologies, such as magnetic resonance imaging (MRI), have shown that the brains of people who have depression look different than those of people without depression. The parts of the brain responsible for regulating mood, thinking, sleep, appetite, and behavior appear to function abnormally.”
Great. But the studies don’t tell us whether depression is causing these differences in the brain or are a result of the depression. There are a lot of problems with suggesting that brain imaging studies are telling us anything of value, and some great studies out there that show us just how misplaced our faith in them can be. Anybody who’s looked at the research for longer than 10 minutes knows this.
“In addition, important neurotransmitters—chemicals that brain cells use to communicate—appear to be out of balance.”
And of course, the neurotransmitter chemicals in the brain being out of balance theory has been discredited now for over 5 years with actual data showing it not to be true. No serious researcher believes this theory any longer, but is still sometimes promoted by some in the industry because it’s so simplistic and “clean.”
So there’s your free consulting advice, something I’d usually charge a company for… And if this is what I found in just a cursory look at one topic, I can imagine what I’d find if I dug deeper.
The challenge with these sites, in my mind, is that what’s a person supposed to do when there’s 3 or 4 or 5 competing wikis trying to be the “best” of this kind of information online? Who to believe? Who to contribute to? And why should anyone bother when everything can just be reverted with someone who has a lot more time (but maybe not a whole lot more information) about any particular topic?
Like most consumers, not knowing the reliability and quality of a site like this, I’ll continue to turn to sites I already do know and trust, or Google. I wish you luck in your efforts, but it will take years before you garner the minimal level of trust necessary to be a reliable and trusted health resource for consumers. (All the more disturbing, of course, because of the big names associated with your effort suggests that much of this information has already been vetted, when it seems that is not really the case.)
Oh, and of course I have to just emphasize and reinforce the immense value that a patient’s voice and knowledge brings to the conversation and informing others on health issues. I turn to wikis and online communities for just such information. In fact, that’s one of the reasons we started NeuroTalk neurological support communities, so that patients had a good, reliable platform in which to share such information.
All, please don’t miss PF Anderson’s excellent, extensive comment above. It was sitting in our approval queue for an hour due to its links, so it’s out of sequence.
Judy,
ACOR is a powerhouse of knowledge :-) It really is. Freeing knowledge doesn’t necessarily requires advanced technology. For the most part it requires completely transparent technology. Remember Clay Shirky’s “Technology gets socially interesting, when it has become technically boring”. That is exactly why ACOR succeeded where other glitzy sites have failed. email is universal and perfect even if you are technophobic. The human conversations will never need technology to reach high. But disseminating knowledge does. LISTSERV is a technology platform and it is designed as a mission critical application. It always works. That’s why we have been using it for 14 years.
Participatory Medicine, IMO, is all about freeing, sharing and disseminating the knowledge. Therefore it can’t exist without technology and Health 2.0 applications will definitely have a significant impact. But apps will fail if they do not provide the resources of those in need. There is just too much out there to remain stuck in an old, broken, and non-democratic mindset.
Authoritative answers are no longer what they used to be. We know about all the early phase clinical trials, including the effects of the agents, long before most doctors. For one group, over 80% of the phase III trial came through the ACOR system. The conversations these patients had while in the trial, helped convinced the pharmaceutical company that a profound shift had taken place. That company is doing, today, a lot better than most.
As you know well, once you have been (mis)diagnosed with a deadly disease you learn very fast to put blind trust in doctors, just because they once obtained a state license, at a level similar to the trust we put today in Bernie Madoff investments. Sorry, but this is the reality for a growing number of Americans. This process can only accelerate. As healthcare reform move centerfield, all of us will realize that we must become involve personally in our care, if we are to avoid total bankruptcy of the Nation. The more involved we become, the more demanding we are. A printed diploma means nothing. Treating hundreds of patients with a specific condition does. If medpedia wants to make sure they provide the best answers they can either open the system or close it even more, requiring proof of expertise that go far beyond the state medical licensing.
Wow what a fascinating debate! I am very interested in everyone’s insightful critique of the challenges faced by Medpedia. I am an occupational therapist and my concern with m
Medpedia is that not only does it exclude and undervalue the direct input of e-pts (at this time) but also of highly skilled and knowledgeable health professionals such as PTs, Speech and Language Therapists, Psychologists etc etc. If Medpedia sought to be purely a physician to physical resource then I can see its merit in its current format but to provide the breadth and depth to make it a truly meaningful resource for all it should harness the power of all stakeholders and contributors to the healthcare field.
Gilles — You are right — ACOR IS a powerhouse. And your story about the clinical trial and the pharma that actually listened is inspiring. However, as someone who has lived and breathed list.servs for the past 7 years, I am convinced there are important benefits that newer social media can provide that will only make our grassroots communities more powerful and effective than they already are. The medium is NOT the message, and technology can’t CREATE community or wisdom, as we well know. But it can enhance the community and the knowledge sharing that already exists. Think of the possibilities if you could easily find the comments of all the patients between 45-55 years of age, weighing 150-175 pounds, with ER+ cancer, who’d been on a metronomic dose of 2000 mg of capcetibine for at least 6 months….an instant experiential database. It blows my mind, anyway! : – )
Hi Dave
Points taken, maybe check out a slightly more meaningful article where you can see the cross references, here.
I just used your blog as a test.
I’ve also moved the rating slightly further up the page above the disclaimers where it may fit mroe naturally
Glad to see medipedia have come on and kept the debate going
Also if anyone from medipedia or otherwise is in the bay area over the next month I will be out there all March on business if you’d like to meet up… I’m happy to buy dinner if that helps
Andy
Sorry the url was too long, try this
http://tinyurl.com/bthogr
Andy,
Wow, now THAT’s responsive! That’s terrific. Yes, you heard my concerns and did exactly what I was looking for.
Heck, you wanna run the whole industry? It might be messy for you, but I like your customer service skills. :–)
I can’t take you up on your Bay Area dinner offer, but if you stop over in Boston, let me know.
It is great to have input from patients but it is crucial also to have input from doctors. Any resource that doesn’t have significant input from both is likely to be less good than it could be.
In a single-author article, one gets the best of both world when that person is a physician, bringing both the patient and the medical perspective. Examples include Dr. Jacob O Levitt’s article on hypokalemic periodic paralysis (http://www.translational-medicine.com/content/6/1/18) and my article on asthma (http://segal.org/asthma/).
One gets close to this with a non-physician who gets very well informed on a disease. This occurs on many listservs, and such individuals often get special access to the medical experts and become a conduit for information flowing in both directions.
If I were running Medpedia I’d build in special roles for physicians with the disease and such non-physician experts.
There is indeed a role for meta-sites where users recommend and rate other resources. A Medpedia article might be best for some diseases, a patient-expert article might be best in other cases, but over time I’d expect that the best content will be material developed as a collaboration of doctors and patients.
There has been an interesting discussion of this on the Periodic Paralysis Association listserv in recent weeks, and the patients say they want collaboratively-produced resources that doctors will co-sign. They want such material to show to their doctors to make a point backed up with authority that will convince their doctors.
We discussed some of these themes in a Health 2.0 article for the American Academy of Neurology (http://www.aan.com/news/?event=read&article_id=5277). Anyone who tries to exclude either doctors or patients from collaborating on such resources is relegating the content to be inferior and of low impact. The way to get the best content is to get doctors and patients involved together, not just patients and not just doctors. Finding models to do this is one of the important issues in health information.
Michael’s comment is invaluable for at least 2 reasons: he is the first person I see here mentioning the exceptional input from physicians who suffer from a specific condition. Medpedia should pay heed because we have repeated examples of what these super-patients can do. Just read tomorrow’s Empowered Patient column (from Elizabeth Cohen) at CNN and you’ll see a prime example of the value of such a physician/patient.
His last comment makes the case for Participatory Medicine. None of us can do it alone anymore. To ensure optimal care we must all participate, as equals. What was valid a year ago when creating the WIkipedia entry on Participatory Medicine, remains painfully true. It is a simple model that uses the democratization of knowledge to facilitate constant brainstorming of a larger circle of people than the old, industrial-period model of expert care ever permitted.
The value of this new paradigm seems obvious to the 1/2 million cancer patients & caregivers who have used the ACOR system. It seems obvious to a far larger number of oncologists who treat these patients than was true just a few years ago. I know that the same applies to many rare diseases. So for those of us who have lived this transformation from the beginning we know it has produced profound results for large numbers of patients.
Why we can’t just finally move this new paradigm to the heart of clinical care, the 80% dealing with the main chronic diseases, remains a mystery.
Maybe this is why even in biblical times there was a proverb “physician heal yourself” http://en.wikipedia.org/wiki/Physician,_heal_thyself
People, I just have to say, I’m blown away by the depth and breadth of this discussion. Your heart, your wisdom and your generosity in taking the time to share here, all of these are just moving to me.
I hope Medpedia and its advisors will be newly informed by the new advisors who’ve posted here.
I would like to introduce myself to the group so I may join in the dialogue. Some of you may know me. My name is Kenneth Youner. I am a retired MD (gastroenterology) and kidney cancer patient.
I was diagnosed with stage 3b clear cell renal cancer in 11/03. In 5/05 I developed metastatic disease to the lymph nodes in my chest. I had a chest surgery in 2005 and after recurrent disease I had a clinical trial with high dose IL2 and Avastin from 10/06-4/07. I am now considering further treatment as my disease is slowly progressing. I have been following the kidney-onc list-serve since early in my disease. I have been relatively inactive for the past 6 months as my beloved wife, Cecile, was battling stage 4 breast cancer. She became seriously ill in Aug. 2008 and was diagnosed with and died from a 2nd acute leukemia in Sept. However I feel that this discussion is too important for me to stay away.
I will try and keep my comments relative to the concept of e-patients and the use of internet communication to foster better medical care and outcomes. I stress outcome as this is what counts.
During the past 15 years I have had too much personal experience with being a patient advocate,first for my wife and then for both of us. I found that knowledge is power (per L.A.). Using my knowledge and being an MD allowed me to contact investigators directly for advice. I also found this vital to my treatment. I am treated by 2 oncologists. One is at the institution that does not use IL2. I however felt the I should investigate that line of treatment. Ultimately I did go on HDIL2. Without my knowledge that would never have happened. Therefore I know first hand how important it is for patients to have access to resources.
Evidence based medicine is the future of good medical practice. I think that both patients and medical professions both play a vital role. When I first joined the kidney-onc list-serve on ACOR I found that a number of people on the list knew a great deal more about kidney cancer than I did. These were patients or patient families. It seemed I was the only MD on the list. Therefore it became apparent to me that if I were to supply any useful commentary to the group I would have catch up to them. To this end I have spent the last 3 years following the renal cancer literature. I have continued in trying to add another dimension to the kidney-onc list-serve discussion.
With this background I would like to offer the following comments.
1. I believe deeply that any open forum that seeks to advance and improve the delivery of and outcome of medical care must include the patient population (with their support groups) and medical professionals. I have found that the greatest drive to improve my own knowledge of renal cancer is to improve my own survival. I have also found that my basic medical background has been a great asset to me.
As I am retired and sought to continue my lifelong desire to work with patients (now called other survivors) I started posting to the kidney-onc list-serve. I found that since many of the other people on the list started to email me questions it became mandatory that I improve my knowledge of renal cancer (at least to the level of the list owners such as Cathy and Robin). This of course was incredibly important to my own care. Thus I find that the mixture of medical professions, especially those who are fellow patients, along with informed and active laypeople, can be a powerful force.
Reliability is an incredibly important and difficult problem. I read e-patient Dave’s quote from Wikipedia on the similarity of participatory medicine to citizen/network journalism. There are similarities. However it is not frequent that an article written for a paper will have a direct impact on how someone will deal with a life changing illness. We are dealing with exactly that issue. So accuracy and dependability is vital. The question is how will you find the medical/scientific community that will offer this review without getting compensation other than the kind that I seek. With the participation of important centers of medical education and excellence, it seems that Medpedia has taken a huge step in this direction.
The question is how to mix the 2 to achieve the best outcomes for patients and their doctors. I think that we should remember that a good physician feels a deep commitment to their patient’s future. As I feel that both patient and doctor input is vital for this to work, I think that this is the model that will ultimately evolve.
It will take education, aimed at both the medical community – both the provider and the customer side – for this to work. I agree that many physicians often have little idea of how to transmit complicated but vital information to their patients and their families.
I am optimistic that we will continue to see the formulation of a medium that will serve patients and health care professionals well.
Great to see you here, Ken. Thank you for caring so much that you took time to write this.
So may I ask, do you have an opinion about Medpedia’s policy that only MDs and some biomed PhD’s can approve content for publication?
To be clear, I’m happy to hear whatever your opinion is – you know from our ACOR exchanges how I value your views.