Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information exchange process in practice

• DOI: 10.1186/s12911-019-0911-z
• Publication Date: 2019-09-18T14:07:31Z
• Authors: Ana Babac; Verena von Friedr...; Svenja Litzkendorf; Jan Zeidler; Kathrin Damm; J.-Matthias Graf ...
• Keywords: Paternalism; Information exchange; Empirical evidence; Empirical Research; Patient Participation

Many European countries have recently implemented national rare disease plans. Although the network is strengthening, especially on macro and meso levels, patients still go a long way through healthcare systems, with many health professionals involved scarce evidence to gather. Specifically, patient involvement in form of shared decision-making can offer further potential increase systems' efficiency micro level. Therefore, we examine implementation concept thus far, explore whether potentials exist-which are particularly relevant within field-and how they be triggered.Our empirical comes from 101 interviews conducted March September 2014 Germany; 55 patients, 13 family members, 33 participated qualitative interview study. Transcripts were analyzed using directed content analysis.The indicate that process increasingly practice. In comparison, however, agreement itself was rarely reported. A majority interactions dominated by individual, informed decision-making, followed paternalistic approaches. The patient-physician relationship characterized distorted trust-building process, which affected not only dependencies due diseases' severity chronic course, but an often-reported stigmatization as stimulants. Moreover, participation high pronounced engagement those affected, diminishing patients' strength vanish during their odyssey care systems. particular roles "expert patients" or "lay experts" field revealed, integrating gathered information.The study reveals named potentials, unique for diseases make integration very attractive, facilitating diagnostics management. It noteworthy does require strengthening position also physicians. Efforts made integrate political frameworks trigger identified assess health-economic impact.