[Patient experiences and patient centeredness : The website project DIPEx Germany]

Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017 Apr;60(4):453-461. doi: 10.1007/s00103-017-2524-y.
[Article in German]

Abstract

Patient centeredness is a central concept in the treatment and rehabilitation of persons with chronic illness in Germany. There are various concepts of and approaches to patient centeredness, most of them developed from the perspective of health care research and the institutions. In terms of participation requirements, there has been a lack of understanding of the patient's perspective and experiences so far. In this article, the authors assume that the collection and analysis of patient experiences can improve patient participation and provide access to the experience of living and coping with an illness, including the patient's interactions with the health care system, their participation, and their preferences for participation. Potential uses for and the limits and risks of utilizing patient experiences are discussed, using the example of the website project Krankheitserfahrungen.de (DIPEx Germany). The project collects patient experiences in the form of narrative interviews. In the course of sharing their stories, the speakers become experts on their own lives and describe where and how they feel engaged in their health care and how they wish to become further engaged, thereby experiencing participation in terms of the International Classification of Functioning. The experience of rehabilitation is viewed in a comprehensive manner for those affected. It is not limited to experiences in specific institutions, but rather, the patient experience includes the context and processes, and describes how patients can find their way back to their lives after the interruption of an illness.

Keywords: Narrative interviews; Participation; Patient centeredness; Patient experience; Rehabilitation.

MeSH terms

  • Chronic Disease / psychology*
  • Chronic Disease / rehabilitation*
  • Germany / epidemiology
  • Health Care Surveys
  • Humans
  • Patient Participation
  • Patient Satisfaction / statistics & numerical data*
  • Rehabilitation / psychology*
  • Rehabilitation / statistics & numerical data*