Search all of the Society for Participatory Medicine website:Search

Everybody is talking about social networks, collective intelligence, wisdom of crowds, smartmobs, User Generated Content and other “2.0” terms. It almost sounds like the only recipe to create the next big idea in the medical internet is to use a few of those contemporary terms to describe what your site provides, even if the site provides only simple community building tools.

Wikis and blogs are of particular significance because they offer the potential to rapidly create “social networks” and UGC with a minimal initial monetary investment. Not surprisingly there is a real explosion of medically oriented wikis and blogs.

A growing number of scientific and academic organizations, including universities and peer-reviewed scholarly publishers have started using wiki technology to see how UGC can fit in their business models and/or to verify the theory that UGC can improve the original publications over time.

2 years ago, with a grant from the Robert Wood Johnson Foundation ACOR setup the LO-wiki, a central resource for anyone interested in the research and the management issues of medical online communities. This was the first of the “Patient-Centered Wikis: Experiences Shared, Questions Answered Collectively”. We followed with a wiki version of the ePatients white paper. Since then, I am constantly listing new sites with potentially innovative uses of wikis to provide timely, relevant and constantly updated scientific information. And once a week I spend a few hours checking all the new entries in the list.

The following cautionary tale, based on the latest batch of participatory scientific publishing experiments shows how they can present both clear benefits and real dangers.

This week list started with an interesting experiment taking place at Scientific American. The “editable” article. It could very well be be the precursor of a new way to get scientific information published.

Entitled “Science 2.0: Great New Tool, or Great Risk? Wikis, blogs and other collaborative web technologies could usher in a new era of science. Or not.” the article is pre-published online and will accept comments from readers for a few months. The article will be rewritten according to the comments received and then will be published in the paper version. It sounds like an excellent idea.

The next stop was the beta version of Elsevier foray into the wikisphere: Wiserwiki.

Its introduction states:

This website was originally started with content from the “Textbook of Primary Care Medicine” (3rd Edition) by John Noble – a leading figure in primary care medicine. It is evolving to become a key source of authoritative, online medical information.

Like most Wikis on the internet (such as Wikipedia), WiserWiki can be read by anyone who has internet access. However, unlike most Wikis, WiserWiki can only be edited by board certified doctors to ensure that the information is as trustworthy and reliable as possible. Doctors can also use WiserWiki as a valuable resource to collaborate with each other and to determine best practices by group consensus. We hope that you enjoy WiserWiki and find it useful.

Finally! I have been advocating for this exact use of wiki for years. Currently, there is no better way to make sure that scholarly documents with important and changing information remain current. I am sure that wiserwiki will be a very successful experiment and a precursor to many more peer-reviewed wikis. Of course many questions remain, including:

  • a better understanding of the motivations of healthcare professionals to give their time (the commodity they lack most)
  • the creation of editorial policies specific to this new publishing paradigm
  • many other management issues that will appear over time.

While I applaud the willingness of Elsevier to try this new publishing paradigm I am also saddened that wiserwiki doesn’t include the possibility for patients and caregivers to provide input. I think it is a serious mistake. Witnessing for 13 years the descriptions of patients/caregivers visits to doctors office and hospitals can only confirm what we all know deep inside: doctors have at least as much to learn from patients as they do from other doctors. And they have never been trained to embrace that simple/radical idea. A longtime promoter of open access to all medical & scientific information, I constantly advocate for the removal of all unnecessary communication barriers between medical professionals and patients. Leveling the field can only be beneficial to all those involved in medical care.

Which brings me to the saddest part of this blog entry. Like many, I was thrilled when, in October 2006, the MIT announced the creation of the Center for Collective Intelligence, bringing together luminaries from across the MIT to conduct research on how new communications technologies are changing the way people work together and understand how to harness the power of large numbers of people—connected together through Internet and other technologies —to better solve a range of business, scientific, and societal problems.

The original press release said:

“The recent successes of things like Google and Wikipedia suggest that the time is now ripe for many more such systems,” said CCI Director Thomas Malone, author of the influential 2004 book, The Future of Work, which examined how information technology enables business to organize itself in new ways. “At CCI, our basic research question is: How can people and computers be connected so that—collectively—they act more intelligently than any individuals, groups, or computers have ever done before?”

As an example, Malone cites the process of writing books. “Today’s publishing industry is built on the assumption that books are written by a single author—or at most a few people. But Wikipedia shows that very different approaches may be possible. What if, for instance, certain kinds of books could be written by large numbers of people with very little central direction?”

One of the activities of the center is the publication, as a wiki, of the Handbook of Collective Intelligence.

“This Handbook provides a survey of the field of collective intelligence, summarizing what is known, providing references to sources for further information, and suggesting possibilities for future research.

The handbook is structured as a wiki, a collection of on-line pages, editable by their readers.

The handbook is hosted by the MIT Center for Collective Intelligence, but we hope that researchers and others from around the world will contribute to it. The process of creating this handbook could itself be an example of collective intelligence.

In parallel with this Wiki, we are developing a database of bibliographic references at citeUlike. The wikis here link to these references at citeUlike.”

What a great idea! So yesterday, it was only natural to revisit the wiki and see if anything has been added about collective intelligence in participatory scientific publishing. With horror I discovered that most of its pages have been wiki spammed! If improperly setup wikis can easily become the target of wiki spammers, using robots to invade large number of wiki pages across multiple wiki platforms. Look here for an image of a CCI wiki page. You certainly would not expect an official wiki from the MIT CCI to fall victim to this highly destructive behavior. When I called the CCI to report the abuse I was told that unfortunately the site was not actively managed lately. This is the regular story of any internet resources. If it is interactive you are guaranteed that someone will try to abuse it, usually sooner than later. Wikis & blogs are no safer and no more protected than any email system. Managing wikis with serious content requires putting in place a complete methodology about its membership, editorial policies & other management issues. Like all other types of online communities blogs and wikis require constant monitoring and a good understanding of the security issues. Failing to do so and failing to constantly implement this methodology can only result in the equivalent of the CCI wiki horror story. So, even though the cost of setting up wikis and blogs is minimal, they require significant investments over time to make sure the content is valid. After all Elsevier may have a sound policy, considering what they are trying to achieve!