title: Cross-sectoral cancer care: views from patients and health care professionals regarding a personal electronic health record.
abstract: Cross-sectoral cancer care is complex and involves collaboration from health care professionals (HCPs) across multiple sectors. However, when health information exchange (HIE) is not adequate, it results in impeded coordination and continuity of care. A web-based personal electronic health record (PEPA) under patients' control, providing access to personal health data across sectors, is being developed. Aim of this study was to explore perceived benefits and concerns. Using a qualitative approach, 10 focus groups were performed collecting views of three prospective user groups: patients with colorectal cancer (n = 12), physicians (n = 17) and other HCPs (n = 16). Representatives from different health sectors across the Rhine-Neckar region (Germany) participated. Data were audio- and videotaped, transcribed verbatim and thematically analysed. Our study shows that patients and HCPs expected a PEPA to enhance cross-sectoral availability of information, cross-sectoral cooperation and facilitate data management. Quality of cancer care was expected to be improved. Concerns were expressed in terms of data protection and data security. Concepts like a PEPA offer the chance to support HIE and avoid gaps of information in cross-sectoral cancer care. This may lead to improvements in coordination and continuity of care. Issues concerning data security and protection have to be addressed.
authors: Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.
authors: I
authors: I
authors: Baudendistel
authors: Ethics and Patient-Oriented Care, National Centre for Tumor Diseases (NCT), Heidelberg, Germany.
authors: E C
authors: EC
authors: Winkler
authors: Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.
authors: M
authors: M
authors: Kamradt
authors: Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.
authors: S
authors: S
authors: Brophy
authors: Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.
authors: G
authors: G
authors: Längst
authors: Ethics and Patient-Oriented Care, National Centre for Tumor Diseases (NCT), Heidelberg, Germany.
authors: F
authors: F
authors: Eckrich
authors: Department of Information Technology and Medical Engineering, University Hospital Heidelberg, Heidelberg, Germany.
authors: O
authors: O
authors: Heinze
authors: Department of Information Technology and Medical Engineering, University Hospital Heidelberg, Heidelberg, Germany.
authors: B
authors: B
authors: Bergh
authors: Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.
authors: J
authors: J
authors: Szecsenyi
authors: Department of General Practice and Health Services Research, University Hospital Heidelberg, Heidelberg, Germany.
authors: D
authors: D
authors: Ose
mesh_terms: D000328:Adult; D000368:Aged; D000488:Allied Health Personnel; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D015179:Colorectal Neoplasms / Q000628:therapy*; D003266:Continuity of Patient Care; D057286:Electronic Health Records; D005260:Female; D017144:Focus Groups; D005858:Germany; D066275:Health Information Exchange; D006282:Health Personnel; D055991:Health Records, Personal; D006801:Humans; D008297:Male; D008875:Middle Aged; D009726:Nurses; D064686:Nutritionists; D000072638:Patient Portals; D059825:Physical Therapists; D010820:Physicians; D010865:Pilot Projects; D036301:Qualitative Research; D000068217:Social Workers
keywords: colorectal cancer; cross-sectoral care; patient participation; personal electronic health record; quality improvement