Baudendistel Ines, Winkler Eva, Kamradt Martina, Brophy Sarah, Längst Gerda, Eckrich Felicitas, Heinze Oliver, Bergh Bjoern, Szecsenyi Joachim, Ose Dominik
Department of General Practice and Health Services Research, University Hospital Heidelberg, Voßstrasse 2, 69115, Heidelberg, Germany,
Support Care Cancer. 2015 Sep;23(9):2613-21. doi: 10.1007/s00520-015-2620-1. Epub 2015 Feb 5.
The complexity of illness and cross-sectoral health care pose challenges for patients with colorectal cancer and their families. Within a patient-centered care paradigm, it is vital to give patients the opportunity to play an active role. Prospective users' attitudes regarding the patients' role in the context of a patient-controlled electronic health record (PEPA) were explored.
A qualitative study across regional health care settings and health professions was conducted. Overall, 10 focus groups were performed collecting views of 3 user groups: patients with colorectal cancer (n = 12) and representatives from patient support groups (n = 2), physicians (n = 17), and other health care professionals (HCPs) (n = 16). Data were audio- and videotaped, transcribed verbatim and thematically analyzed using qualitative content analysis.
The patients' responsibility as a gatekeeper and access manager was at the center of the focus group discussions, although HCPs addressed aspects that would limit patients taking an active role (e.g., illness related issues). Despite expressed concerns, PEPAs possibility to enhance personal responsibility was seen in all user groups.
Giving patients an active role in managing a personal electronic health record is an innovative patient-centered approach, although existing restraints have to be recognized. To enhance user adoption and advance PEPAs potential, key user needs have to be addressed.
疾病的复杂性和跨部门医疗保健给结直肠癌患者及其家庭带来了挑战。在以患者为中心的护理模式中，让患者有机会发挥积极作用至关重要。本研究探讨了潜在用户对患者在患者控制的电子健康记录（PEPA）背景下所扮演角色的态度。
在区域医疗保健机构和卫生专业领域开展了一项定性研究。总共进行了10个焦点小组讨论，收集了3个用户群体的意见：结直肠癌患者（n = 12）、患者支持小组代表（n = 2）、医生（n = 17）以及其他医疗保健专业人员（HCPs）（n = 16）。数据进行了音频和视频录制，逐字转录，并采用定性内容分析法进行主题分析。
患者作为把关人和访问管理者的责任是焦点小组讨论的核心，尽管医疗保健专业人员提到了一些会限制患者发挥积极作用的方面（如与疾病相关的问题）。尽管存在担忧，但所有用户群体都认为PEPA有增强个人责任感的可能性。
让患者在管理个人电子健康记录中发挥积极作用是一种创新的以患者为中心的方法，不过必须认识到现有的限制因素。为了提高用户接受度并挖掘PEPA的潜力，必须满足关键用户的需求。
