Breast cancer stories on the internet : improving search facilities to help patients find stories of similar others

Overberg, R.I. (2013)

Doctoral Thesis

The primary aim of this thesis is to gain insight into which search facilities for spontaneously published stories facilitate breast cancer patients in finding stories by other patients in a similar situation. According to the narrative approach, social comparison theory, and social cognitive theory, reading stories about similar others may have the most positive impact. The research followed a user-centred design: users of search facilities (i.e., patients who want to read stories written by others) were involved in every phase of the research so that the search facilities could be tailored to these users__ needs and preferences instead of forcing users to change their search behaviour to conform to search facilities that were developed without their involvement. We examined which breast cancer patients spontaneously publish their story online and which themes they write about in their stories, and how these stories are presented and disclosed on websites. We then examined which topics and writer characteristics patients prefer to search for and translated these preferences into search facilities. Finally, we examined which search facilities show the most positive effects on patient satisfaction and search success, and how patients actually search for stories written by others. The research was conducted from a clinical informatics perspective, using knowledge from the fields of information retrieval, human-computer interaction and psychology.

• Social comparison
• Patient stories
• Search facilities
• User-centred design
• Breast cancer

• All authors: Overberg, R.I.
• Supervisor: Schonk, J.H.M.
• Co-supervisor: Otten, W.
• Qualification: Doctor (dr.)
• Awarding Institution: Leiden University Medical Center (LUMC), Leiden University
• Date: 2013-09-10
• ISBN (print): 9789090277486
• Sponsorship: Netherlands Organisation for Scientific Research (NWO)