@article{RuetherSebodeLohseetal.2021,
  author    = {R{\"u}ther, Ferenc Darius and Sebode, Marcial and Lohse, Ansgar W. and Wernicke, Sarah and B{\"o}ttinger, Erwin and Casar, Christian and Braun, Felix and Schramm, Christoph},
  title     = {Mobile app requirements for patients with rare liver diseases},
  series = {Clinics and research in hepatology and gastroenterology},
  volume    = {45},
  journal   = {Clinics and research in hepatology and gastroenterology},
  number    = {6},
  publisher = {Elsevier Masson},
  address   = {Amsterdam},
  issn      = {2210-7401},
  doi       = {10.1016/j.clinre.2021.101760},
  pages     = {10},
  year      = {2021},
  abstract  = {Background: More patient data are needed to improve research on rare liver diseases. Mobile health apps enable an exhaustive data collection. Therefore, the European Reference Network on Hepatological diseases (ERN RARE-LIVER) intends to implement an app for patients with rare liver diseases communicating with a patient registry, but little is known about which features patients and their healthcare providers regard as being useful. Aims: This study aimed to investigate how an app for rare liver diseases would be accepted, and to find out which features are considered useful. Methods: An anonymous survey was conducted on adult patients with rare liver diseases at a single academic, tertiary care outpatient-service. Additionally, medical experts of the ERN working group on autoimmune hepatitis were invited to participate in an online survey. Results: In total, the responses from 100 patients with autoimmune (n = 90) or other rare (n = 10) liver diseases and 32 experts were analyzed. Patients were convinced to use a disease specific app (80\%) and expected some benefit to their health (78\%) but responses differed signifi-cantly between younger and older patients (93\% vs. 62\%, p < 0.001; 88\% vs. 64\%, p < 0.01). Comparing patients' and experts' feedback, patients more often expected a simplified healthcare pathway (e.g. 89\% vs. 59\% (p < 0.001) wanted access to one's own medical records), while healthcare providers saw the benefit mainly in improving compliance and treatment outcome (e.g. 93\% vs. 31\% (p < 0.001) and 70\% vs. 21\% (p < 0.001) expected the app to reduce mistakes in taking medication and improve quality of life, respectively).},
  language  = {en}
}
@phdthesis{LeBonhomme2015,
  author    = {Le Bonhomme, Fanny},
  title     = {Psychiatrie et soci{\´e}t{\´e} en R{\´e}publique D{\´e}mocratique Allemande},
  url       = {http://nbn-resolving.de/urn:nbn:de:kobv:517-opus4-407164},
  school      = {Universit{\"a}t Potsdam},
  pages     = {480},
  year      = {2015},
  abstract  = {The patients of the Charité Psychiatry and Neurology clinic (East-Berlin, GDR) during the 1960s are at the center of this study. While taking into account the interpretation provided by the medical discourse, this research aims at reconstructing the experiences and the trajectories of these individuals by inscribing them in the context of the socialist society. Relying on patients' records - these records being the main source of this study - the goal of this research is to reach a better understanding of underlying tensions in the socialist society in relation to the political and ideological context. As these sources show, when they talk to the therapist, patients can speak according to rules which differ from the rules implemented in the socialist society. Because they may contain traces of speeches that would usually be silenced as a result of censorship or self-censorship, or of the unspeakable, shameful or delirious nature of this speech, the patients' records prove to be a valuable source for the historian. From marital tensions caused by ideological disagreements to the inner conflicts of an "ardent marxist", from the pain triggered by the exclusion from the party to the pain caused by the construction of the Berlin Wall, from the "reuniting delirium" to the delusions according to which the West appears as a threat, the individual and singular experiences of the patients allow to reconstruct, through a microhistorical approach, certain tensions inherent to the working of the socialist society.},
  language  = {fr}
}