Authors: Ines Baudendistel Eva Winkler Martina Kamradt Sarah Brophy Gerda Längst Felicitas Eckrich Oliver Heinze Bjoern Bergh Joachim Szecsenyi Dominik Ose
Publish Date: 2015/02/05
Volume: 23, Issue: 9, Pages: 2613-2621
Abstract
The complexity of illness and crosssectoral health care pose challenges for patients with colorectal cancer and their families Within a patientcentered 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 patientcontrolled electronic health record PEPA were exploredA 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 analysisThe 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 eg illness related issues Despite expressed concerns PEPAs possibility to enhance personal responsibility was seen in all user groupsGiving patients an active role in managing a personal electronic health record is an innovative patientcentered approach although existing restraints have to be recognized To enhance user adoption and advance PEPAs potential key user needs have to be addressed
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