PDF(Pubmed)
Abstract：
OBJECTIVE: Cancer is associated with an urgent need for understandable and reliable information, which is often not satisfied by information available online. Therefore, as part of the PIKKO project, a web-based knowledge database (WDB) was introduced to provide cancer patients with quality-assured, evidence-based information. This paper aims to provide insights into the usage (Who? How? What?) and the effects regarding health literacy of the 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 min per session online (PNs: 9 min 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.
CONCLUSIONS: 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.
BACKGROUND: 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.
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 min per session online (PNs: 9 min 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.
CONCLUSIONS: 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.
BACKGROUND: 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.
摘要：
目的：癌症与迫切需要可理解和可靠的信息有关，这通常不能被网上提供的信息所满足。因此,作为PIKKO项目的一部分，引入了基于网络的知识数据库（WDB），为癌症患者提供质量保证，基于证据的信息。本文旨在提供有关WDB的用法（谁？如何？什么？）和对健康素养的影响的见解。
方法：评估患者调查和自动生成的日志文件数据。两个用户组，患者和患者导航员(PNs)，进行了比较。
结果：在整个项目期间，13个PN占所有访问的1/3。413名患者平均使用WDB两次，平均每次在线花费12分钟（PN：每次9分钟，更频繁地）。最感兴趣的三个主题是“治疗”，患者的“营养”和“致癌作用”，和“治疗”，PNs的“自然疗法”和“法律法规/支持”。在接受调查的病人中，69%的人表示WDB有助于做出明智的决定，76%的人找到了他们想要的信息，90%的人认为WDB是提供信息的合适方式。
结论：我们的WDB以数字方式提供了有关癌症及其治疗的重要信息，患者和PNs。在常规癌症护理中，WDB可以提高健康素养和明智的决策。
背景：该研究在DRKS00016703（2019年2月21日，回顾性注册）的德国临床试验注册中进行了回顾性注册。https://www.drks.de/drks_web/navigate。做什么？navigationId=审判。HTML&TRIAL_ID=DRKS00016703。
方法：评估患者调查和自动生成的日志文件数据。两个用户组，患者和患者导航员(PNs)，进行了比较。
结果：在整个项目期间，13个PN占所有访问的1/3。413名患者平均使用WDB两次，平均每次在线花费12分钟（PN：每次9分钟，更频繁地）。最感兴趣的三个主题是“治疗”，患者的“营养”和“致癌作用”，和“治疗”，PNs的“自然疗法”和“法律法规/支持”。在接受调查的病人中，69%的人表示WDB有助于做出明智的决定，76%的人找到了他们想要的信息，90%的人认为WDB是提供信息的合适方式。
结论：我们的WDB以数字方式提供了有关癌症及其治疗的重要信息，患者和PNs。在常规癌症护理中，WDB可以提高健康素养和明智的决策。
背景：该研究在DRKS00016703（2019年2月21日，回顾性注册）的德国临床试验注册中进行了回顾性注册。https://www.drks.de/drks_web/navigate。做什么？navigationId=审判。HTML&TRIAL_ID=DRKS00016703。
