Clinical data for paediatric research: the Swiss approach

Abstract

Background and purpose Continuous improvement of health and healthcare system is hampered by inefficient processes of generating new evidence, particularly in the case of rare diseases and paediatrics. Currently, most evidence is generated through specific research projects, which typically require extra encounters with patients, are costly and entail long delays between the recognition of specific needs in healthcare and the generation of necessary evidence to address those needs. The Swiss Personalised Health Network (SPHN) aims to improve the use of data obtained during routine healthcare encounters by harmonizing data across Switzerland and facilitating accessibility for research. The project “Harmonising the collection of health-related data and biospecimens in paediatric hospitals throughout Switzerland (SwissPedData)” was an infrastructure development project funded by the SPHN, which aimed to identify and describe available data on child health in Switzerland and to agree on a standardised core dataset for electronic health records across all paediatric teaching hospitals. Here, we describe the results of a two-day symposium that aimed to summarise what had been achieved in the SwissPedData project, to put it in an international context, and to discuss the next steps for a sustainable future. The target audience included clinicians and researchers who produce and use health-related data on children in Switzerland. Key highlights The symposium consisted of state-of-the-art lectures from national and international keynote speakers, workshops and plenary discussions. This manuscript summarises the talks and discussions in four sections: (I) a description of the Swiss Personalized Health Network and the results of the SwissPedData project; (II) examples of similar initiatives from other countries; (III) an overview of existing health-related datasets and projects in Switzerland; and (IV) a summary of the lessons learned and future prospective from workshops and plenary discussions. Implications Streamlined processes linking initial collection of information during routine healthcare encounters, standardised recording of this information in electronic health records and fast accessibility for research are essential to accelerate research in child health and make it affordable. Ongoing projects prove that this is feasible in Switzerland and elsewhere. International collaboration is vital to success. The next steps include the implementation of the SwissPedData core dataset in the clinical information systems of Swiss hospitals, the use of this data to address priority research questions, and the acquisition of sustainable funding to support a slim central infrastructure and local support in each hospital. This will lay the foundation for a national paediatric learning health system in Switzerland.

Towards values‐based healthcare for inherited metabolic disorders: An overview of current practices for persons with liver glycogen storage disease and fatty acid oxidation disorders

“…Data repurposing is warranted for RDs, which is also demonstrated for electronic health record data for the diagnosis of RDs 43 . Ideally, real‐world data and routinely collected healthcare data should be processed according to the FAIR guiding Principles (Findability, Accessibility, Interoperability, and Reusability), as exemplified by the Swiss approach 44 . Governance on individuals' big health data and their interoperability should become top priorities.…”

“…43 Ideally, real-world data and routinely collected healthcare data should be processed according to the FAIR guiding Principles (Findability, Accessibility, Interoperability, and Reusability), as exemplified by the Swiss approach. 44 Governance on individuals' big health data and their interoperability should become top priorities. Sustainable coalitions are necessary between all relevant stakeholders, such as HCPs, institutions, payers, industrial parties, insurance companies, healthcare planning and health policy, and governments, putting patients and their families at the center.…”

Consensus Minimal Dataset for Pediatric Emergency Medicine in Switzerland

“…The process and content are published elsewhere. 15 The final main module is shown in Supplementary Table 2, http://links.lww.com/PEC/ B24. To define the Swiss PEM minimal dataset, data elements relevant to PEM were preselected by the coordinating team.…”

“…The SwissPedData main module was developed before the start of the PEM consensus process described here. The process and content are published elsewhere 15 . The final main module is shown in Supplementary Table 2, http://links.lww.com/PEC/B24.…”

“…The Swiss Federal Government thus initiated the Swiss Personalized Health Network (SPHN) initiative to create a nationwide, interoperable data platform for health-relevant data 14 . Under the umbrella of SPHN, a pediatric-specific data harmonization project, the SwissPedData project, aimed at developing a common data model (CDM) across Swiss pediatric hospitals 15 . SwissPedData involved a multistage consensus process including pediatric providers from all Swiss pediatric tertiary care hospitals to reach agreement on 1) a list of common data elements (CDEs) for SwissPedData, 2) standardized answer format for each CDE, and 3) a classification of each CDE as either mandatory, recommended, or optional.…”