Wikis to facilitate patient participation in developing information leaflets: first experiences

Abstract

Objective: Although patients have gained a wealth of experienced based knowledge they are usually not involved in the development of patient information. We sought to determine the technical feasibility of wikis in generating dynamic patient information leaflets with participation from patients and healthcare professionals and identified barriers and facilitators for wiki use.

Methods: An open wiki for patients receiving intrauterine inseminations and a closed wiki for patients receiving in vitro fertilization at one Dutch university clinic were used. Feasibility was assessed by analyzing logging data, content and users’ experiences and expectations. The latter were addressed by means of semi-structured interviews, which were also used to identify barriers and facilitators to wiki use.

Results: Both patients and professionals worked on the information simultaneously, not hindered by time or location restrictions. The open IUI wiki was visited by 2957 and the closed IVF wiki by 424 users. About 28 barriers and 14 facilitators for using the wiki were identified.

Conclusion: Wikis are promising tools to improve patient participation in the creation of patient information. Future projects should aim to increase active use of wikis by testing interventions based on the wide spectrum of barriers and should evaluate the quality of the content produced.

• Health 2.0
• participatory healthcare
• patient-centered care
• patient empowerment
• wiki

Acknowledgements

We would like to thank all the patients and professionals for their enthusiasm and willingness to participate. We especially thank Mrs K. van Mook and Mrs J. Schoonenberg for their help in the creation and maintenance of the wikis. Also, we are grateful to the technical team of MijnZorgnet for their support.

ETHICAL CONSIDERATIONS

The Radboud University Medical Center Nijmegen ethics committee reviewed the study protocol and approved the study to proceed.

AUTHORS’ CONTRIBUTIONS

All authors contributed to the study plan and protocol. T.B. and N.D. analyzed interviews and results were interpreted by W.N. and M.F. T.B. wrote the first draft of the manuscript, and M.F., W.N. and J.K. reviewed it at various stages to its final version. All authors reviewed the manuscript and approved its final version.