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.
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).