Wikis Can Help Patients Suggest Clinical Practice Guidelines, Study Finds

A specialized wiki could help patients play a part in developing clinical practice guidelines, according to a study published in the Journal of Medical Internet Research, FierceHealthIT reports.

About the Study

For the study, researchers from the Netherlands developed a wiki about infertility treatment that initially included 90 recommendations based on interviews with 12 patients.

Researchers then invited additional patients to participate in the wiki. Over a seven-month period, the wiki received 298 unique visitors and expanded to include 289 recommendations.

A guideline development group then assessed the value of the recommendations.

Main Findings

In the wiki, patients described several challenges related to the infertility treatment process, including:

  • A lack of evening hours at treatment centers;
  • Having to wait in the same room as pregnant women; and
  • Concerns about gynecologists' "lack of empathy."

According to the researchers, the level of participation in the project suggests that the wiki was a "promising and feasible" tool to involve patients in clinical practice guideline development.


To further refine such medical wikis, the researchers recommended:

  • Automatically reducing the number and shortening the length of the recommendations;
  • Developing a standard format for recommendations;
  • Adding a separate motivation page where patients could describe their reasoning for a recommendation; and
  • Paying more attention to the informational character of the wiki (Bird, FierceHealthIT, 10/29).

to share your thoughts on this article.