Database Development for Different Care Settings: Experience of the Palliative Care Clinic in Ticino
T. Fusi-Schmidhauser1, A. Oriani1, A. Bordoni1, C. Gamondi1 (1Bellinzona)
Standardized data are crucial to generate evidence that can influence goals of clinical practice and electronic databases allow to describe the epidemiology of patients accessing care. The Palliative and Supportive Care Clinic in Ticino consists of a mobile team covering seven public hospitals, four ambulatories, two integrated care wards and one acute inpatients unit.
To explore the experience of a database development for different palliative care settings.
After an extensive literature review, an electronic database was developed in 2014 and implemented for data collection in 2015. The databank consists of a set of common data and a specific dataset relevant to hospital and ambulatory settings. A further database development was implemented for data collection in two integrated care wards. The Palliative Care Team tested the electronic database. Data collection was completed by the caring team and the entire database was managed by one administrator. OpenClinica@ was used for data storage and statistical analysis.
At the end of 2017, more than 2500 patients have been registered in the database, thus generating a high volume of information, both epidemiological and clinical. The electronic system showed to be easy and feasible to use in all settings. Palliative care provision across all available services was traceable and care trajectories according to patients’ complexity were identifiable.
Routinely collected data are the main source of information to generate evidence about the effectiveness of treatments and interventions. The rigorous collection, analysis and interpretation of these information can be used to improve care for patients in a palliative care setting. Future priorities will include missing data management, improve the quality of data collection and foster data linkage to extrapolate multivariate analysis for clinical and epidemiological purposes.