Supportive Care in Cancer

, Volume 23, Issue 9, pp 2613–2621 | Cite as

The patients’ active role in managing a personal electronic health record: a qualitative analysis

  • Ines BaudendistelEmail author
  • Eva Winkler
  • Martina Kamradt
  • Sarah Brophy
  • Gerda Längst
  • Felicitas Eckrich
  • Oliver Heinze
  • Bjoern Bergh
  • Joachim Szecsenyi
  • Dominik Ose
Original Article



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.


Patient empowerment Personal electronic health record Colorectal cancer Chronic care 



We want to thank all our focus group participants and Sarah Brophy, an English native speaker working at the Department of General Practice and Health Services Research for reviewing this manuscript.

Source of funding

This study is funded by the German Federal Ministry of Education and Research (funding code 01KQ1003B).

Conflict of interest

The authors do declare that no conflict of interest does exist.

Supplementary material

520_2015_2620_MOESM1_ESM.doc (940 kb)
ESM 1 (DOC 939 kb)
520_2015_2620_MOESM2_ESM.pdf (70 kb)
ESM 2 (PDF 69 kb)
520_2015_2620_MOESM3_ESM.docx (30 kb)
ESM 3 (DOCX 30 kb)


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Copyright information

© Springer-Verlag Berlin Heidelberg 2015

Authors and Affiliations

  • Ines Baudendistel
    • 1
    Email author
  • Eva Winkler
    • 2
  • Martina Kamradt
    • 1
  • Sarah Brophy
    • 1
  • Gerda Längst
    • 1
  • Felicitas Eckrich
    • 2
  • Oliver Heinze
    • 3
  • Bjoern Bergh
    • 3
  • Joachim Szecsenyi
    • 1
  • Dominik Ose
    • 1
  1. 1.Department of General Practice and Health Services ResearchUniversity Hospital HeidelbergHeidelbergGermany
  2. 2.National Centre for Tumor Diseases (NCT)Ethics and Patient-Oriented CareHeidelbergGermany
  3. 3.Department of Information Technology and Medical EngineeringUniversity Hospital HeidelbergHeidelbergGermany

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