Update: I received an e-mail from one of the creators of Ask Dr. Wiki stating that they are now requiring folks to prove that they have medical credentials before they are allowed to contribute to the wiki. I hate barriers as much as the next person, but in the case of a medical wiki, there have to be some safeguards in place for it to be accurate and useful.
Let me preface this by saying that I’m not a medical librarian and have no background in medical librarianship other then working with our Masters in Nursing Administration students. So I’m probably about to show my extreme ignorance on this subject.
Last week, David Rothman mentioned a wiki called Ask Dr. Wiki. This site was created by a group of cardiologists from the Cleveland Clinic to have a space for medical professionals to share medical information as well as X-Rays, angiograms, etc. Obviously, information sharing is extremely crucial in a field where being up-to-date on current practice can mean the difference between killing and saving a patient. However, this is also a field that is build on evidence-based practice. Anecdotal evidence is not acceptable and can lead to dangerous decision-making. Medical decision-making must be based on solid scientific evidence that has been reviewed by other experts in the field. When you are making life-changing diagnoses and treatment decisions, anything less would be criminally irresponsible.
And this is pretty much what David said. David was easily able to edit this wiki, although he is not a doctor or health practitioner of any kind. I’m not as concerned about the ability to add nonsense to the wiki as I am about the ability to create convincing but un-true entries that do not get systematically reviewed by experts. While there is a lot of detailed and useful information in this wiki (take a look at the Brugada Criteria page), there is no proof here that the information is true. If I made convincing changes to a page outside of the specialties of the wiki editors (who are all cardiologists), would it get noticed? Maybe, maybe not. While I think that information-sharing in the medical profession is a noble goal, there need to be safeguards in place to ensure that the information is reliable. Otherwise, you have something that most medical professionals wouldn’t think to consult and that could potentially do a grave disservice to doctors and patients.
I thought the arguments in favor of this wiki in the comments on David’s post were pretty poor. They consisted of the following:
- Any vandalism will be cleaned up within 24 hours since we get alerts via RSS that an edit has been made.
- Once out of med school, a doctor may not have access to important resources like Up to Date so this is a good way to supplement what I already know and stay up to date.
- Some safeguards may prevent people from contributing.
ACK!
I was looking at another, even more frightening wiki called Wikisurgery, which doesn’t seem to have much in the way of content as of yet. Just imagine before you are scheduled to get your hernia repaired, your surgeon looks up the procedure on a wiki that has not undergone any review from other experts. Fortunately, this is a far from likely scenario, but still! The disclaimer on the Wikisurgery site says the following:
Wikisurgery is an online open-content collaborative encyclopedia, that is, a voluntary association of individuals and groups who are developing a common resource of surgical knowledge. The structure of the project allows anyone with an Internet connection and World Wide Web browser to alter its content. Please be advised that nothing found here has necessarily been reviewed by professionals with the expertise required to provide you with complete, accurate or reliable information.
That is not to say that you will not find valuable and accurate information in Wikipedia; much of the time you will. However, Wikisurgery cannot guarantee the validity of the information found here. The content of any given article may recently have been changed, vandalized or altered by someone whose opinion does not correspond with the state of knowledge in the relevant fields.
I guess I just don’t understand what value this medical information has if there is no guarantee of (or even attempt to ensure) accuracy.
So how could medical professionals share information on a wiki and avoid these problems? There definitely needs to be more of a peer-review structure where those who are reviewing articles in the wiki come from all of the specialties. For each article, there should be some review process, and there should be some way of indicating whether the article people are looking at has been reviewed my other experts or has not. They could have a stable version of each article that has been reviewed and then all new additions to each article would have to be reviewed before being incorporated into the article. Maybe instead of creating an Ask Dr. Wiki, those cardiologists could have created a wiki just for cardiology, or even more specifically, just for electrophysiologists. I think it’s much easier to control quality in a wiki that is very focused and that is used by a smaller community. They may also have been more likely to attract a community of editors since folks often like a more insular community when contributing to a wiki.
David Rothman suggested I take a look at PubDrug as an example of a wiki in the medical field that is doing things the right way. I’m definitely impressed. Better to go slow and get good information than to get a lot of contributions that are not vetted and are thus rather useless.
One of the medical wikis I saw required a person to prove that they are a medical professional before being given an account. I spoke to my husband about this idea, since he is a physician. He said that the risk you could run by posting medical information on the Web that is tied to your medical license would give him pause. If a patient dies because of something a doctor learned on a wiki and then they can tie that wiki contribution back to a specific doctor, would there be some liability there? Maybe, maybe not. But could it seriously damage the credibility of both doctors involved (the one writing the entry and the one trusting it)? Certainly. How many medical professional would actually feel comfortable posting to a wiki like this, disclaimer or not?
My husband also said that he can’t imagine that there would be a situation where he would have to resort to using a medical wiki for informing medical decision-making. Regardless of whether your hospital has canceled their subscription to Up to Date or not, if you are a general practitioner, you should have it (really is $400 – $500 a year too much for a practitioner to spend on something so valuable???) and if you’re a specialist, you should be keeping up with the specialty journals in your field. As a medical professional, you are either already going to know anything you would have found in the wiki on that particular topic or if it’s a topic you don’t know about, a wiki isn’t going to be your first, second or even third stop.
I’m also wondering if a wiki designed for doctors to share information with each other (as opposed to creating a resource for patients) needs to be publicly accessible to all individuals? Couldn’t you have it set up as a wiki behind the firewall where people who are involved in the medical profession could apply for accounts and then could both read and edit the wiki? This would prevent laymen from stumbling upon your wiki and using it as a resource. A doctor would probably notice an error, but an average Joe or Jane probably wouldn’t. Do you want people to be diagnosing their medical conditions based on something you’d written on a wiki? If it’s only meant for information-sharing among medical professionals, maybe a good idea is to make it only accessible to that community.
I can think of other useful medical-related wiki applications. A wiki that provides annotated bibliographies of the latest research in certain areas would be tremendously useful. This would not be giving specific information about diagnosis or treatment, but would be giving information to doctors (or patients) on how to find useful and quality information on that topic. That is certainly something that medical librarians could get involved with too. The UBC HealthLib Wiki and the Evidence Based Medicine Librarian Wiki are two very interesting projects spearheaded by librarians.
A foundation may want to create a wiki on the specific condition they deal with to provide a space for those suffering from that condition and their families to share information. This would not be a space for doctors to write about the latest treatments, so it would not be a space that purports to give out medical or professional advice. Instead it would be a place for patients and their family to share ideas, information for coping with the illness, their experiences with the medical profession, etc. Communities like this provide so much value, and I think it would make so much sense for . The Autism Spectrum Wiki is a great example (though it seems to be having database problems as I write this). I also found a similar wiki for those suffering from (or survivors of) cancer. While the Share community doesn’t have a wiki, it is a similar community for infomation sharing and support for those who have had a premature baby. Since wikis are so great for information sharing, and in an unrestricted community are not so great for information to support medical decision making, a supportive community wiki would be a great use.
I do think there are ways that medical wikis could be used and useful, but it would really require significant safeguards. And I am alarmed at the lack of safeguards that I see on so many of these wikis. Maybe a few doctors can keep up with checking the validity of edits made to a wiki that is just getting started and receives very few edits. However, once a wiki gets successful and busy, things can easily be missed. It took me a week (and an e-mail from someone else) to notice that someone had accidentally deleted half of the Librarians Who IM page a few weeks ago. Stupid of me not to notice, but it wouldn’t kill anyone.
I agree with you about Pubdrug making a good decision to start out slowly and gather good info as it builds! This was a point of discussion when I posted about the certified monographs going up, where one pharm student was disappointed not to see a certain drug listed. When she understood the meticulous process behind publishing, she calmed down. From the reader side of things, it’s good to have scope and intent fully explained, especially with so many patients going to the “net” to find health and other info.
Practitioners concerned about access to the research literature — as they all should be! — would do far better to support legislation and other efforts around OPEN ACCESS than to start easily-defaceable wikis.
Heck yeah, Dorothea! 🙂
Meridith,
I totally agree with you that all information needs to be evidence based and that is exactly what we will require if content is added to our Wiki. There is always some “Art” to medicine but anecdotal information published not based on scientific literature will not be allowed. The four main editors have all been trained for 12 years including medical school and our medical knowledge extends beyond Cardiology. We all have published articles in peer reviewed journals and we all practice evidence based medicine. We have spent a lot of time reading and reviewing the literature and all of us have reviewed articles for scientific publications.
I think as you see more medical wikis started all will have different “personalities” based on what their editors allow to be published. I can assure that we will only allow evidence based medical information to be published and we will be vigilant in deleting inaccurate information. I feel that larger non-medical Wikis such as Wikipedia will have a difficult time coming up with a consensus opinion regarding what is allowed or not allowed on the wiki.
Concerning the topic of “credentialing” authors which it sounds like Pubdrug is requiring. We have not YET had problems with non-qualified authors. Our only problem has been with some vandalism which was not malicious and done to prove that wikis can be tampered with, but honestly it has not been an issue. The reason we are not locking it down is that I feel that by initially restricting users or creating obstacles we will not build a community. The wiki technology is well known but in the medical community we have lagged decades behind in our use of Information Technology and the use of wikis or even blogs is foreign. I am sure you have come across the article on the accuracy of info as the number of edits increase on Wikipedia ( http://www.nature.com/news/2007/070226/full/070226-6.html). I can promise you that all of us are primarily physicians and all believe “First Do No Harm”. If information was published that was not accurate on our wiki I would shut it down.
Concerning paying for Up to Date. Wikis are global. A lot of our hits come from outside the United States where they do not have access to Up to Date. Imagine a physician practicing medicine in rural America or in a village in Africa. With a laptop and an internet acess you have Up to Date information. What a great use of Information Technology at No cost.
Medical Wikis are a powerful tool and if used correctly can improve the quality of care in a community but if abused as both you and David have pointed out can be dangerous.
I assure you that we will take advice and criticism from anyone on how to improve this technology as it grows.
Thanks for highlighting the topic.
Ken Civello
My spouse is a physician too–Up to Date is pretty different from journal lit and plays a different role; I think an open access-type Up to Date is commendable, but why not make it readable by all, but editable only by those who have been vetted? I would hope that that would make the use go up, because it would be more authoritative. Going open access doesn’t mean throwing out peer review, and using a wiki to create an alternative to Up to Date doesn’t mean you can’t be selective about who is contributing. Good luck to Ken, I hope he and his colleagues find a way to make the wiki successful and authoritative.
Librarians and physicians make a wicked combination, eh Meredith?!
Well said, Ab.
I can see how this could be potentially useful though. On occasion, I’ll watch something like Mystery Diagnosis on the Discovery Health Channel. Usually patients go though multiple doctors before finding one that correctly diagnoses their particular medical problem. A network (although not necessarily a wiki) of some type would allow doctors post the symptoms of the patient that other doctors may recognize. Sometimes a person has something incredibly rare and life threatening that a family practitioner could never isolate, but is easily recognizable by someone with expertise in a very focused field.
Ethan, I totally agree with you. Information sharing is so incredibly valuable in that field, but it definitely has to be done in a responsible way so that doctors can get accurate information they can trust. Considering the incidences of malpractice lawsuits in the U.S., I can’t imagine too many doctors would base a medical decision on a resource they weren’t certain was trustworthy.
Great points, Ab! I’ve always pushed the idea that information on a wiki can be useful and of good quality. I think wikis are so new in the medical profession; they will find their way eventually. It’s nice to see more of a movement towards open access and open sharing of knowledge in that profession (or in any profession). And yes, doctors and librarians do make an excellent pair; we’re both professions that require equal amounts of curiosity and skepticism. 🙂