Affiliation:
1. Institute of Psychosocial Medicine, Psychotherapy and Psychoonocology, Jena University Hospital
2. Department of Psychology, MSB Medical School Berlin GmbH
3. IKK Südwest
4. Department of Haematology and Medical Oncology, Jena University Hospital
5. German Cancer Society
Abstract
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
Publisher
Research Square Platform LLC