Friday, September 19, 2008
Wikipedia and Palliative Medicine: A Call to Arms
The internet is the go-to place for patients and families to research health information, but as many have warned the information should be vetted and probably 'discussed with your physician.' Publishing online simplifies the sharing and redistribution of information, which brings the obvious downside of finding useless information and mis-information.
In palliative medicine you see lots of efforts at trying to educate individuals and groups at the local, regional, and national level about the strengths of palliative care and how our field approaches such complex situations. What if for 3 months we got together as a field to ensure searchable content from a high-utilization source like Wikipedia was factual, easy to understand, and accurately reflected the themes, tools, and issues related to our field?
I have occasionally dabbled in Wikipedia editing but have not had the time to get past only a few minor edits on some palliative care related pages. Editing the information is not too hard if you know how to use a computer. Some of the formatting guidelines are a little tricky to learn, but for anyone who is dedicated, I bet it is doable.
AAHPM recently had a page started and it has a lot of good information written by Crazyerinsync, whoever that is. But more could be written, for example I added the locations of several of the Annual Assembly locations for historic reference.
Here are some good examples of palliative care related articles on Pallimed:
Opioid: There is a lot of information on this page that I have not been able to find easily in journals or books. Things I have confirmed from the Wikipedia page from other sources have been pretty accurate. But there is still room for clean-up and refined editing, for example:
In palliative care opioids are always used in combination with adjuvant analgesics...A few good editors could really see this is not wholly accurate. It should read 'are usually' or 'are commonly.'
Generally most of the specific medicine pages are pretty well detailed, but could you some fact checking and clearer editing. Morphine is one of the better ones and it was a recent 'featured article on the Medicine Portal, but hydromorphone is long and rambling.
Some of the less stellar examples inc
Palliative Care: The page is all over the place and has no coherence. Actually 'hospice' redirects to 'palliative care' which is unusual in that many people have some understanding of hospice but are not quite familiar with the term 'palliative care.' There is enough nuanced differences to the general reader of Wikipedia, that I believe 'hospice' and palliative care' should be separate pages.
Terminal Sedation: Not very detailed, especially about the ethical arguments for and against. Probably should be renamed 'palliative sedation.'
Do not resuscitate: Sorely lacking accurate and supported data regarding survival after CPR. Wikipedia editors have even tagged it as having questionale neutrality. The 'CPR' article is actually written pretty well. It would be nice to see the DNR article with that much information.
Children's Hospice: Mostly just a bunch of lists.
Advance Directives: Nothing more then a pamphlet of info. Simply descriptive.
Defibrillation: No information regarding ethics of deactivation.
Anorexia and Cachexia: Hungry for more material.
Prognosis: Did anyone see this coming...not much there.
etc., etc.
So do any readers have any ideas of how to rally a project of storming Wikipedia to create a whole lot of new content and reorganize and edit some of the current palliative care related material? Even if it just started with identifying articles to be worked on as a community that would be a start. If there is enough interest we could start a WikiProject collaboration.
Would it be helpful if Pallimed highlighted 2-3 articles per month to be worked on?
Would it be helpful to start another blog for those interested in a project like this?
Help brainstorm this out...even if you think this is a dumb idea. Say so!
4 Responses to “Wikipedia and Palliative Medicine: A Call to Arms”
September 20, 2008
Dear Christian,
Please take care of yourself better; we need you to be present to continue this wonderful blog.
Trolling the Wiki for "improvements" and "truth" is such a losers game, as you yourself have discovered.
There Is No End to the Mystification and Just Plain Ignorance - especially about medical matters.
So I urge you, Dr. C. and you, Dr. Drew if Doc C can't control himself, you'll have to control him... just don't go there, comrades. The "Wiki" is a bottomless pit - there is literally no end to the corrections that need be made.
Madness lies there. Why not stay here, with us, instead?
You have been warned. -smile-
September 20, 2008
Thanks for the caution Alex. I am by no means suggesting I give up Pallimed for becoming a Wikipedia editor.
I, as do many people realize, that Wikipedia is not the bastion of truth, but it is a extensive, easily accessible database that people commonly reference.
But given that it is used for medical searches by our patients and their families, I would argue that a community effort by palliative care professionals could help make it a more reliable resource, and actually may be a better use of fixed resources (time and money) then another brochure about a hospice or palliative care program.
A Wiki is never done and this aspect is Wikipedia's benefit and burden. No one is going to go look up "Hospice" in the World Book to decide if it is right for them. I have been fairly impressed by the volunteer editors on Wikipedia and their ability to weed out trolls and vandalizers.
But the reason I bring it up here is because it could be something that harnesses the intellectual power and volunteerism of our little community here.
Your warnings should be heeded by anyone who would like to embark on an ambitious project such as this. I suggested changing the title of 'Terminal Sedation' to 'Palliative sedation' with supporting evidence and I was accused of being a murderer.
But intimidation on Wikipedia should not prevent the spread of more accurate information. Adding content to Wikipedia has the potential to reach so many more people then Pallimed. I checked the stats, Wikipedia seems to be more popular than us.
For now!! Muwha-ha-ha-ha!
March 02, 2009
Christian,
I think this is a great idea, especially for someone in your position who can provide expert attention on the subject. You might want to start tagging pages with incorrect information with the {{Expert-verify}} wiki template tag just to prepare for changes to come.
Just a couple of other points for Wikipedia editing.
Before posting, make sure you have people review the basics:
http://en.wikipedia.org/wiki/Wikipedia:Five_pillars
http://en.wikipedia.org/wiki/Wikipedia:Manual_of_Style
Other regular users are pretty saavy on what is allowed and will nuke an improper post.
It would also be a good idea to post of list of other references (I.E. reliable web pages / news sources) that people can draw content references from if they want to make changes to wikipedia pages.
If you want to create a new page, make sure it fits the guidelines in the articles above, but also make sure you know how to use categories and links in wikipedia. Articles need to be connected to each other, so use category: tagging and double brackets around link words [[hospice]]
Also, I wasn't quite sure what you meant when you said hospice redirects to palliative care? Seems like hospice does have its own page
http://en.wikipedia.org/wiki/Hospice
March 27, 2011
Dear Christian,
Please take care of yourself better; we need you to be present to continue this wonderful blog.
Trolling the Wiki for "improvements" and "truth" is such a losers game, as you yourself have discovered.
There Is No End to the Mystification and Just Plain Ignorance - especially about medical matters.
So I urge you, Dr. C. and you, Dr. Drew if Doc C can't control himself, you'll have to control him... just don't go there, comrades. The "Wiki" is a bottomless pit - there is literally no end to the corrections that need be made.
Madness lies there. Why not stay here, with us, instead?
You have been warned. -smile-
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