In Response To Medpedia: Who gets to say what info is reliable?

First off I have to say I was heartened by what Dave deBronkart has to say on this subject. It’s made me think about why I initially setup KCR and what the motivation was for it.  However, rather than go off on too big a tangent lets deal with the main issue that I think Dave is eluding to which is “Who Will Vet The Vetters?”.

This is a tough one and I think his ideas around how to resolve this (or at least improve the situation) are valid.  I’ve had a think about these 3 ideas and also had a think about how KCR could look at implementing them:

  1. Patients and clinicians should be able to write comments on Medpedia articles.   Within mediawiki (the software that runs wikipedia and KCR, and I suspect also forms the backbone of medipedia as well) it is possible to use the discussion tab on each article to enable open discussion.  The premiss on Wikipedia is that if there is a debate or disagreement on a subject it is debated in the discussion tab not on the main page.   A consensus conclusion is drawn from that discussion and those conclusions are then added onto the main page. OK, so how have we implemented this in KCR?  Slightly differently, but hopefully with the same outcome.  What we’ve decided to do is direct people to an open forum so the debate can be had there.   The issue I’m finding is that we don’t get that much discussion on articles, and I personally think this is a bad thing because there is no way I can assume that 100% of what is on KCR is accurate as people’s experiences are different.   The reason we decided to put the discussions on a forum was to keep the KCR site as factual as possible and not have it full of personal comments or political views i.e. just stick to the basics.  The idea isn’t to stifle debate and comments just to keep them within the forum and not muddy the content on KCR.  I could be persuaded to open up the discussion tabs and work in the same way as wikipedia if that’s what people would prefer.
  2. Patients should be able to mark an article as being helpful or not.  I think this is a fantastic idea and I will see if there is a way in which this can be implemented on KCR.  There’s usually some add-in software knocking around that can be used.  I’ll report back.  I’ve always wanted feedback as that’s the only way we can make the site better and more relevant to the readers.  
  3. Clinicians should be able to do the same and mark articles as helpful or not. I suppose the only debate on this is if this needs to be separate from the patient ratings.

Dave has also made a reasonable point on the ACOR site whilst responding to my comments. He kindly said that KCR is heading in the right direction, however he has also quite rightly put the caveat that he doesn’t know the community around KCR, and yes this raises an important point.

  • How reliable is the information?

So,we’re back to “Who Vets the Vetters?” and more to the point who are these vetters?

This is where I have to be self critical and make it clear that on KCR the information is an aggregation of data that has been drawn from peoples personal research or though direct patient experience.  So, given this, the information should NOT be seen as clinical advice, but more as a means of reference giving the readers and patients a more rounded and detailed view of Kidney Cancer.

I had an interesting discussion over lunch last week where it was asserted that clinicians tend not to like sites like this. “It can confuse people and make it harder for the clinician if they have to field a mass of disinformation each time they see a patient”.  I do sympathise with this view and I can see how annoying it may be, however it fills a gap.

What’s gap?   Well one gap for me was that hideous time between visits to a specialist, and in the UK this gap can be long.  I am private now, but was on the NHS up to the point of my nephrectomy and I remember how stressed I was waiting for scan results and tests, it was the worst time of my life.  I filled that void of information by searching around the web trying to find answers for myself, some answers were good, others pointed me to non existent miracle cures.  Basically there was no one place I could go that could give me information at a level I could understand and trust.  The medical sites were too technical.  

I don’t think the clinicians could fill this gap, it would be unreasonable to expect them to be available 24 * 7 at the end of a phone to deal with every ache or twinge that a patient feels and is paranoid about.  It’s also the case that half the questions I’ve got for my specialist I either forget to ask, feel too stupid to ask or am too scared to ask at the time of the consultation, so I end up doing it on the web.  Crazy I know, but I admit it!!

I also hope that it will ultimately help the forums and lists like ACOR and KCSN.  I think they both give invaluable support, guidance and information and we’d be lost without them, and I hope that KCR can complement them by providing articles that the experts can point people at rather than having to repeat themselves when new users come on asking the same questions.  I also hope it provides a good source of aggregated news articles that relate to Kidney Cancer.

I personally believe that as you get a critical mass of contributors on sites like these  i.e. KCR and Medipedia that they start to self regulate naturally and the real value starts to emerge. I’m a great believer in social networking and I think these things are just an extension of that.  Whilst I think there is a danger that there will be some disinformation, I also believe that if you have the ability to openly debate the information as well, then the community as a whole will be able to moderate and fix it.  So for me, the community becomes the vetters, and within each community there are always people who are seen as “gurus” and I suspect that these are the folks that will float to the top of the contributors heap.

You’ll be glad to hear I’m going to bring this particular blog to a close now, as it’s too long, however there is so much more to talk about and it would be interesting to discuss how wikipedia moderates itself and how it is perceived as an information source …. maybe tomorrow.

Again, thanks to Dave deBronkart  for bringing this topic up

Posted under Andy Thomas, General

This post was written by AndyThomas on February 23, 2009