Advancing SMart solutions and eliminating barriers for the Acquisition, Analysis, and Sharing of Health data in Switzerland [SMAASH]
Third-party funded project
Project title Advancing SMart solutions and eliminating barriers for the Acquisition, Analysis, and Sharing of Health data in Switzerland [SMAASH]
Principal Investigator(s) Elger, Bernice Simone
Co-Investigator(s) Perneger, Thomas
Project Members Geneviève, Lester Darryl
Mc Lennan, Stuart Roger
Wangmo, Tenzin
Martani, Andrea
Organisation / Research unit Ethik / Bio- und Medizinethik (Elger)
Project start 01.07.2017
Probable end 31.12.2020
Status Active
Abstract

Linked health data provide an important basis for taking decisions on the continuing development of the Swiss health system. The intention is to make proposals for merging existing data from the out-patient and in-patient settings and from the insurance sector.

When medical services are used and invoiced, the process generates data that are important for steering the health service. The value of these data, however, is limited: firstly because there are major gaps in the data, especially as regards the out-patient setting; secondly because many data are held in isolation; and thirdly because many of the data are not available for research purposes. This means that there is insufficient data to provide a basis for decisions on developing the health system.

The aim of the study is to create the conditions for improving the data situation in the Swiss health service. Factors that hinder or promote data harmonisation will be identified and policy makers will be made aware of the issue.

A literature analysis and successful national examples will be used to identify the factors that determine the success of data merging, and the requirements that a harmonised database needs to fulfil will be established. In addition, roughly 20 interviews will be conducted with international experts in order to find out how other countries approach data harmonisation. A Delphi survey will also be used to identify the factors that hinder or promote data harmonisation in Switzerland. The results will be summarised and recommendations for Switzerland will be formulated.

The study will help to facilitate the shared use of linked health data. It will also encourage debate about the protection and use of personal health data.

Financed by Swiss National Science Foundation (SNSF)

Published results ()

  ID Autor(en) Titel ISSN / ISBN Erschienen in Art der Publikation
4486819  Geneviève, Lester Darryl; Wangmo, Tenzin; Dietrich, Damien; Woolley-Meza, Olivia; Flahault, Antoine; Elger, Bernice Simone  Research Ethics in the European Influenzanet Consortium: Scoping Review  2369-2960  JMIR public health and surveillance  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
4511107  Geneviève, Lester Darryl; Martani, Andrea; Wangmo, Tenzin; Paolotti, Daniela; Koppeschaar, Carl; Kjelsø, Charlotte; Guerrisi, Caroline; Hirsch, Marco; Woolley-Meza, Olivia; Lukowicz, Paul; Flahault, Antoine; Elger, Bernice Simone  Participatory Disease Surveillance Systems: Ethical Framework  1439-4456 ; 1438-8871  Journal of Medical Internet Research  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
4523817  Geneviève, Lester Darryl; Martani, Andrea; Mallet, Maria Christina; Wangmo, Tenzin; Elger, Bernice Simone  Factors influencing harmonized health data collection, sharing and linkage in Denmark and Switzerland: A systematic review  1932-6203  PLoS ONE  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
4524028  Martani, Andrea; Geneviève, Lester Darryl; Pauli-Magnus, Christiane; McLennan, Stuart; Elger, Bernice Simone  Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism  1664-8021  Frontiers in Genetics  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
4525314  Martani, Andrea; Geneviève, Lester Darryl; Poppe, Christopher; Casonato, Carlo; Wangmo, Tenzin  Digital pills: a scoping review of the empirical literature and analysis of the ethical aspects    BMC Medical Ethics  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
4514924  Martani, Andrea; Shaw, David; Elger, Bernice Simone  Stay fit or get bit - ethical issues in sharing health data with insurers' apps  1424-7860 ; 1424-3997  Swiss Medical Weekly  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
4483798  McLennan, Stuart; Maritz, Roxanne; Shaw, David; Elger, Bernice  The inconsistent ethical oversight of healthcare quality data in Switzerland  1424-7860 ; 1424-3997  Swiss Medical Weekly  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 
4481611  McLennan, Stuart; Shaw, David; Celi, Leo Anthony  The challenge of local consent requirements for global critical care databases  1432-1238  Intensive Care Medicine  Publication: JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift) 

Cooperations ()

  ID Kreditinhaber Kooperationspartner Institution Laufzeit - von Laufzeit - bis
4238515  Elger, Bernice Simone  Seitz, Claudia, Professor  Juristische Fakultät, Universität Basel  23.01.2018  31.01.2020 
1544126  Elger, Bernice Simone  Emanuel, Ezekiel, Prof. Dr.  University of Pennsylvania, Philadelphia  20.06.2012  21.06.2021 
4528247  Elger, Bernice Simone  Egli, Philipp,   01.01.2019  01.01.2023 
3401485  Shaw, David; Elger, Bernice Simone  Perneger, Thomas, Professor  University of Geneva  03.01.2016  01.01.2021 
   

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10/08/2020