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

Inform Health Soc Care. 2014 Mar;39(2):124-39. doi: 10.3109/17538157.2013.872107.

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.

MeSH terms

  • Consumer Health Information
  • Feasibility Studies
  • Female
  • Humans
  • Internet
  • Pamphlets*
  • Patient Education as Topic*
  • Patient Participation*
  • Patient-Centered Care
  • Qualitative Research
  • Reproductive Techniques, Assisted*
  • User-Computer Interface*