Wikis allow patients to help develop clinical practice guidelines

Patients can play a key role in developing clinical practice guidelines (CPG) through a specialized wiki, a group of Dutch researchers report in the current issue of the Journal of Medical Internet Research.

The researchers tested their theory by developing a wiki about infertility treatment, according to the article, "Feasibility of a Wiki as a Participatory Tool for Patients in Clinical Guideline Development."

Initial content of 90 recommendations was developed following in-depth interviews with 12 patients.  Over a seven-month period, additional patients were invited to participate in the wiki, resulting in 298 unique visitors to the website and 289 recommendations. The recommendations were winnowed down, with a guideline development group assessing their value.

Patients highlighted perceived bottlenecks in the infertility treatment process, such as lack of evening hours, as well as concerns about gynecologists' "lack of empathy" and the fact that infertility patients had to wait in the same area as pregnant patients, according to the article.

Researchers concluded the wiki was a "promising and feasible tool" for actively involving patients in CPG development. Among recommendations for refining the wiki were:

  • Automatically reducing the number and shortening the length of recommendations.
  • Developing a fixed format for recommendations.
  • Including a separate motivation page.
  • Paying specific attention to the informational character.

Moving forward, the researchers recommended developing a modified tool that patients would evaluate for usability, and involving patient representatives and recommendations in the next stage of wiki development.

Wikis are gaining popularity in the health IT world as ways to draw input from various sources for developing clinical guidelines. The Office of the National Coordinator for Health IT, for example, launched a Standards & Interoperability Framework Initiative wiki this summer for standardizing clinical decision support.

Meanwhile, researchers at the University of Michigan created a wiki cataloguing medical-device technologies for use in areas with limited resources. The Global Health Medical Device Compendium is hosted by Appropedia.

To learn more:
- read the article
- visit the ONC S&I Framework Initiative website