Ethics practices associated with reusing health data: an assessment of patient registries.

Background: As routinely collected patient data have become increasingly accessible over the years, more attention has been directed at the ethics of using such data for research. Patient data is often available to researchers through patient registries that typically collect data of patients with a specific condition. While ethical guidelines for using patient data are presented frequently in the literature, it is currently unknown how patient registries implement the recommendations from these guidelines in practice and how they communicate their practices.

[Supply of Medical Aids in home Mechanical Ventilation: needs-Based and Safe? - The Views of Stakeholders Related to the Care Process on the Current Status and Perspectives].

Introduction: The supply of medical aids is essential for patients with home mechanical ventilation. However, it is largely unclear to what extent this supply is needs-based and safe.

Methods: As part of a health services research project, 20 expert interviews were conducted with a heterogeneous group of stakeholders related to ventilation-specific medical aids supply.

["Ensuring patient safety is one of our primary responsibilities." - Results of a qualitative study on maintaining safety in ventilation-associated technical aid supply].

Background: Maintaining safety is critical in home mechanical ventilation (HMV). It is co-determined by the availability of reliable technical aids and their correct application. Ensuring safe aid supply is part of the aid providers'́ legal mandate.

Infrastructure- and workforce capacity for the provision of health care to people with invasive home mechanical ventilation: A scoping review of indicators and norms.

Introduction: Both the availability and adequacy of infrastructure- and workforce capacity are critical to provide integrated and continuing care, especially to people with complex care needs such as those with invasive home mechanical ventilation (HMV). This review aims to synthesise indicators and norms that are available for assessing this infrastructure- and workforce capacity.

Methods: A scoping review was conducted by searching PubMed, Livivo, the grey literature, specific registries, and the websites of relevant professional societies for international publications on specific infrastructure- and workforce capacity indicators or norms on HMV from January 2000 up to and including March 2021.

Long-Term Care for Tracheotomised Patients With or Without Invasive Ventilation. Lessons Learned from a Scoping Review of International Concepts.

Introduction: Patients with long-term tracheostomies, with or without mechanical ventilation have complex and comprehensive healthcare needs. The number of patients is increasing internationally. Evidence suggests poor healthcare quality and outcomes, especially in Germany.

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.