A web-based knowledge database to provide evidence-based information to cancer patients: Utilization within the PIKKO study

Abstract

Purpose In the context of cancer, a high amount of dangerous disinformation exists online. High quality information websites are less visible in online searches, and profit-driven websites have lower quality. As part of the PIKKO project, a web-based knowledge database (WDB) was used to provide cancer patients with quality-assured, evidence-based information. This paper aims to provide information about the usage (Who? How? What?) and the effects regarding health literacy of WDB. Methods A patient survey and automatically generated logfile data were evaluated. Two user groups, patients and patient navigators (PNs), were compared. Results The 13 PNs were responsible for 1/3 of all accesses over the entire duration of the project. The 413 patients used WDB twice on average and spent an average of 12 minutes per session online (PNs: 9 minutes per session, more frequently). The top 3 topics of interest were ‘therapy’, ‘nutrition’ and ‘carcinogenesis’ for the patients, and ‘therapy’, ‘naturopathy’ and ‘legal regulations/support’ for the PNs. Of the patients surveyed, 69% said that WDB was helpful in making informed decisions, 76% found the information they wanted and 90% thought WDB was an appropriate way to provide information. Conclusion Our WDB provided important information about cancer and its treatment on a digital way both, to patients and PNs. In routine cancer care, the WDB can improve health literacy and informed decision-making. Trial registration: This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21 Feb 2019, retrospectively registered). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703