Healthcare needs of vulnerable patient groups: available data and existing gaps in Germany with respect to long-term mechanical ventilation

AIM: Long-term invasively ventilated patients exhibit exceptional and resource-intensive healthcare needs. However, major knowledge gaps in Germany complicate appropriate approaches to best address these demands. This paper evaluates available information on the patient group and their healthcare needs from German data sources and derives implications for healthcare planning and regulation by national/federal self-governing bodies, political decision-makers, and specialized providers. METHODS: Based on the concept of needs, we addressed the normative dimension typically characterized by epidemiological data. Based on existing German health system data resources, an explorative approach was utilized to identify and characterize available databases providing information on the patient group and/or their healthcare. RESULTS: To date, no available database provides information on the healthcare needs of this patient group. As of the reporting year 2017, the diagnosis-related groups (DRG) statistics will provide hospital-specific data on home invasive ventilation interventions, but the data do not provide information on long-term care. Claims data may be a promising source for cross-sectoral evaluation of healthcare needs but feature methodological challenges. These results call for efforts to address limited data eligibility, adopt a broader understanding of healthcare needs, and identify actions needed to evidence informed and needs-oriented healthcare. CONCLUSION: Future approaches on needs-oriented specialized healthcare should close the existing knowledge gap based on reliable data. In addition to normative information, they should consider subjective dimensions on a life course perspective and quantitative and qualitative service performance characteristics across multiple sectors and professions.