Peer-to-peer

Disease-orientated consumer online communities radically change the way in which individuals monitor their health, but they could also create new ways of testing treatments and speed patient recruitment into clinical trials. So starts the editorial in the September issue of Nature Biotechnology (26, 953; 2008). From the editorial:
"Several online communities for patients now offer a wealth of anecdotal and factual information about health, and tools for networking with like-minded individuals. The web sites are public, collaborative and simple to use. They are also starting to offer patients content that goes beyond what is available through existing gatekeeper-controlled healthcare infrastructures. Some even offer to host personal medical data, empowering patients to understand and manage their individual care in a manner that is powerful and disruptive to current medical practice. If these 'user-generated healthcare' data can be harnessed with data from conventional biomedical and clinical research, the benefits could extend beyond patients to payors, providers and the drug industry itself."
User-generated communities discussed in the editorial include Daily Strength, Inspire and PatientsLikeMe, the last of which has more than 7.000 registered users. PatientsLikeMe is different from other services in that patients record data about themselves and share it in an open environment. The editorial continues: "Using standardized metrics provided on the site, patients can log their symptoms, severity and progression, and drug regimens and dosages, together with the efficacy and side effects. All the data is then neatly displayed in bar graphs and progress curves. Patients can thus rapidly identify others with similar ailments in similar stages of disease. They can use the wisdom of the crowd to learn which treatments work and which don't. This is particularly useful for patients with rare conditions (and their physicians) who might not otherwise encounter comparable sufferers." The editorial goes on to discuss some of the benefits and disadvangates of this patient-driven form of "peer review".

Posted by Maxine Clarke on September 30, 2008
Categories: Policy and Public, Technical solutions | Permalink | Comments (0)

Cross-posted at Nautlius:
Biology Week, an online "open house" for biologists, biology students and other interested people, begins today (22 September) on Citizendium, a 'next-generation' wiki encyclopedia started by Wikipedia co-founder Larry Sanger. (See this Peer to Peer post for a brief comparison of online encyclopaedias.)
From the Citizendium announcement: "during this week, biologists and anyone interested in the topic are invited to test the Citizendium system. Editors and authors from the project's Biology Workgroup will be on hand to meet and greet new people on the wiki. "I strongly believe that the Citizendium system will be appealing to many scientists and scholars," said Sanger. "Many of them just need to give it a try. Biology Week is an excuse for biologists to try out the system together." Gareth Leng, a professor of Experimental Physiology at the University of Edinburgh, and Citizendium author and editor, described the project: 'Our role will not be to tell readers what opinions they should hold, but to give them the means to decide, rationally, for themselves. The role of experts is critical—not to impose opinions, but to support accuracy in reporting and citing information'. "
The Citizendium, or "citizens' compendium", uses the same software as Wikipedia and is a public-expert hybrid project to produce a general reference resource. The community encourages general public participation, but makes a low-key, guiding role for experts. It also requires real names and asks contributors to sign a "social contract." As a result, the project is said to be vandalism-free and, despite its youth (its public launch was just 18 months ago), has steadily added more than 8,000 articles.
Further information:
Citizendium website and press release about this project.
Biology Week homepage.
Sample article: Life, said to demonstrate the success of the collaborative-editing system.
(Thank you to Shirley Wu for alerting me to this project.)

Posted by Maxine Clarke on September 22, 2008
Categories: Policy and Public, Technical solutions | Permalink | Comments (0)

"WikiGenes is the first wiki system to combine the collaborative and largely altruistic possibilities of wikis with explicit authorship. In view of the extraordinary success of Wikipedia there remains no doubt about the potential of collaborative publishing, yet its adoption in science has been limited." So writes Robert Hofmann of MIT in a Perspective article in the September edition of Nature Genetics (40, 1047-1051; 2008) about this "dynamic collaborative knowledge base for the life sciences that provides authors with due credit and that can evolve via continual revision and traditional peer review into a rigorous scientific tool." From the article:

In WikiGenes, authorship tracking technology enables users to directly identify the source of every word. This was not possible in first generation wikis, although authorship is essential to acknowledge contributors and to appraise the reliability of information. On the basis of clear authorship attribution, users can rate each other, and a self-regulating reputation system can be implemented. This is useful to address quality maintenance and the problem of editing conflicts, which used to depend on slow and theoretically refutable top-down decisions. To facilitate contribution and unambiguous use of scientific language, WikiGenes enables editing of articles in their final layout and citation of scientific terminology and references through integrated database and ontology lookups. All contributions to WikiGenes will be open access.

The full article can be read and edited here, at the WikiGenes website.

Posted by Maxine Clarke on September 02, 2008
Categories: Technical solutions | Permalink | Comments (1)