title: The patients' active role in managing a personal electronic health record: a qualitative analysis.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors: Department of General Practice and Health Services Research, University Hospital Heidelberg, Voßstrasse 2, 69115, Heidelberg, Germany, ines.baudendistel@med.uni-heidelberg.de.
authors: Ines
authors: I
authors: Baudendistel
authors: Eva
authors: E
authors: Winkler
authors: Martina
authors: M
authors: Kamradt
authors: Sarah
authors: S
authors: Brophy
authors: Gerda
authors: G
authors: Längst
authors: Felicitas
authors: F
authors: Eckrich
authors: Oliver
authors: O
authors: Heinze
authors: Bjoern
authors: B
authors: Bergh
authors: Joachim
authors: J
authors: Szecsenyi
authors: Dominik
authors: D
authors: Ose
mesh_terms: D000328:Adult; D000368:Aged; D015179:Colorectal Neoplasms / Q000175:diagnosis* / Q000628:therapy*; D057286:Electronic Health Records / Q000458:organization & administration*; D005260:Female; D017144:Focus Groups; D006282:Health Personnel; D006801:Humans; D008297:Male; D008875:Middle Aged; D010358:Patient Participation / Q000379:methods*; D018802:Patient-Centered Care; D010865:Pilot Projects; D011446:Prospective Studies; D036301:Qualitative Research
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