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Advancing SMart solutions and eliminating barriers for the Acquisition, Analysis, and Sharing of Health data in Switzerland [SMAASH]

English title Advancing SMart solutions and eliminating barriers for the Acquisition, Analysis, and Sharing of Health data in Switzerland [SMAASH]
Applicant Elger Bernice
Number 167356
Funding scheme NRP 74 Smarter Health Care
Research institution Institut für Bio- und Medizinethik (IBMB) Universität Basel
Institution of higher education University of Basel - BS
Main discipline Public Health and Health Services
Start/End 01.07.2017 - 31.12.2021
Approved amount 399'062.00
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All Disciplines (3)

Discipline
Public Health and Health Services
Health Education
Legal sciences

Keywords (6)

sharing; smarter health systems; epidemiology; barriers; health data; law and ethics

Lay Summary (German)

Lead
Förderung des Zusammenführens von Gesundheitsdaten in der SchweizVerknüpfte Gesundheitsdaten bilden eine wichtige Entscheidungsgrundlage, um das Schweizer Gesundheitssystem weiterzuentwickeln. Es sollen Vorschläge gemacht werden, wie die bestehenden Daten aus dem ambulanten und stationären Versorgungsbereich sowie aus dem Versicherungsbereich zusammengeführt werden können.
Lay summary

Im Zusammenhang mit der Inanspruchnahme von medizinischen Leistungen und der Rechnungsstellung werden wichtige Daten für die Steuerung des Gesundheitswesens generiert. Deren Aussagekraft ist jedoch eingeschränkt. Erstens gibt es insbesondere im ambulanten Bereich grosse Datenlücken. Zweitens sind viele Daten nicht zusammengeführt, und drittens sind viele Daten der Forschung nicht zugänglich. Entsprechend fehlen Entscheidungsgrundlagen, um das Gesundheitswesen weiterzuentwickeln.

Ziel der Studie ist es, Voraussetzungen zu schaffen, um die Datenlage im Schweizerischen Gesundheitswesen zu verbessern. Hindernde und fördernde Faktoren zur Datenharmonisierung sollen identifiziert und Entscheidungsträger für das Anliegen sensibilisiert werden.

Basierend auf einer Literaturanalyse und anhand erfolgreicher nationaler Beispiele werden Erfolgsfaktoren für eine Datenzusammenführung identifiziert und die Anforderungen an eine harmonisierte Datenbasis festgelegt. Weiter werden rund 20 Interviews mit internationalen Expertinnen und Experten geführt, um zu ermitteln, wie andere Länder die Datenharmonisierung umsetzen. Zudem werden mittels einer Delphibefragung die hindernden und fördernden Faktoren für die Datenharmonisierung in der Schweiz identifiziert. Die Ergebnisse werden synthetisiert und Handlungsempfehlungen für die Schweiz formuliert.

Die Studie trägt dazu bei, eine gemeinsame Nutzung von verknüpften Gesundheitsdaten zu ermöglichen. Zudem wird die Diskussion im Zusammenhang mit dem Schutz beziehungsweise der Nutzung von persönlichen Gesundheitsdaten gefördert.

Direct link to Lay Summary Last update: 18.04.2017

Lay Summary (French)

Lead
Promouvoir la compilation de données médicales en SuisseDes données médicales recoupées constituent une base de décision essentielle dans l’optique du développement du système de santé suisse. Des propositions sont formulées en vue de la compilation des données disponibles dans les secteurs ambulatoires et stationnaires ainsi que dans les assurances.
Lay summary

Des données importantes pour le pilotage du système de santé sont générées dans le cadre du recours aux prestations médicales et de la facturation. Leur pertinence est toutefois limitée. D’une part, ces données sont très lacunaires, en particulier dans le secteur ambulatoire, et d’autre part, un grand nombre d’entre elles ne sont ni compilées ni accessibles pour la recherche. Par conséquent, les bases de décision nécessaires au développement du système de santé font défaut.

L’étude vise à créer les conditions pour améliorer le socle de données sur le système de santé suisse. Il s’agit d’identifier les facteurs de nature à entraver ou à favoriser l’harmonisation des données et de sensibiliser les décideurs à la problématique.

Les facteurs déterminants pour la compilation de données sont identifiés sur la base d’une analyse de la littérature et à la lumière d’exemples de réussite nationaux, et les exigences pour une base de données harmonisée sont définies. Une vingtaine d’entretiens sont menés avec des expertes et experts internationaux afin de déterminer comment d’autres pays harmonisent leurs données. En outre, les facteurs de nature à entraver ou à favoriser l’harmonisation des données en Suisse sont identifiés au moyen de la méthode Delphi. Les résultats sont synthétisés et des recommandations sont formulées pour la Suisse.

L’étude ouvre la voie vers une utilisation commune de données de santé recoupées. Elle encourage par ailleurs le débat autour de la protection et de l’utilisation des données médicales personnelles.

Direct link to Lay Summary Last update: 18.04.2017

Lay Summary (English)

Lead
Promoting the merging of health data in Switzerland 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.
Lay summary

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.

Direct link to Lay Summary Last update: 18.04.2017

Responsible applicant and co-applicants

Employees

Project partner

Publications

Publication
Eine neue Generation des Datenschutzes? Gegenwärtige Unvollständigkeit, mögliche Lösungswege und nächste Schritte
Martani Andrea, Hummel Patrik (2022), Eine neue Generation des Datenschutzes? Gegenwärtige Unvollständigkeit, mögliche Lösungswege und nächste Schritte, Springer Berlin Heidelberg, Berlin, Heidelberg, 27-54.
Individual notions of fair data sharing from the perspectives of Swiss stakeholders
Geneviève Lester Darryl, Martani Andrea, Elger Bernice Simone, Wangmo Tenzin (2021), Individual notions of fair data sharing from the perspectives of Swiss stakeholders, in BMC Health Services Research, 21(1), 1007-1007.
The devil is in the details: an analysis of patient rights in Swiss cancer registries
Martani Andrea, Erard Frédéric, Casonato Carlo, Elger Bernice Simone (2021), The devil is in the details: an analysis of patient rights in Swiss cancer registries, in Journal of Medical Ethics, medethics--medethics-.
Comment on: Research projects in human genetics in Switzerland: analysis of research protocols submitted to cantonal ethics committees in 2018
Martani Andrea (2021), Comment on: Research projects in human genetics in Switzerland: analysis of research protocols submitted to cantonal ethics committees in 2018, in Swiss Medical Weekly, w20521.
Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework
Martani Andrea, Geneviève Lester Darryl, Egli Sophia Mira, Erard Frédéric, Wangmo Tenzin, Elger Bernice Simone (2021), Evolution or Revolution? Recommendations to Improve the Swiss Health Data Framework, in Frontiers in Public Health, 9, 638.
Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders
Geneviève Lester Darryl, Martani Andrea, Perneger Thomas, Wangmo Tenzin, Elger Bernice Simone (2021), Systemic Fairness for Sharing Health Data: Perspectives From Swiss Stakeholders, in Frontiers in Public Health, 9, 418.
'It’s not something you can take in your hands'. Swiss experts’ perspectives on health data ownership: an interview-based study
Martani Andrea, Geneviève Lester Darryl, Elger Bernice, Wangmo Tenzin (2021), 'It’s not something you can take in your hands'. Swiss experts’ perspectives on health data ownership: an interview-based study, in BMJ Open, 11(4), e045717-e045717.
Structural racism in precision medicine: leaving no one behind
Geneviève Lester Darryl, Martani Andrea, Shaw David, Elger Bernice Simone, Wangmo Tenzin (2020), Structural racism in precision medicine: leaving no one behind, in BMC Medical Ethics, 21(1), 17-17.
Digital pills: a scoping review of the empirical literature and analysis of the ethical aspects
Martani Andrea, Geneviève Lester Darryl, Poppe Christopher, Casonato Carlo, Wangmo Tenzin (2020), Digital pills: a scoping review of the empirical literature and analysis of the ethical aspects, in BMC Medical Ethics, 21(1), 3-3.
Data protection and biomedical research in Switzerland: setting the record straight
Martani Andrea, Egli Philipp, Widmer Michael, Elger Bernice (2020), Data protection and biomedical research in Switzerland: setting the record straight, in Swiss Medical Weekly, 150, w20332.
Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism
Martani Andrea, Geneviève Lester Darryl, Pauli-Magnus Christiane, McLennan Stuart, Elger Bernice Simone (2019), Regulating the Secondary Use of Data for Research: Arguments Against Genetic Exceptionalism, in Frontiers in Genetics, 10, 1254.
Factors influencing harmonized health data collection, sharing and linkage in Denmark and Switzerland: A systematic review
Geneviève Lester Darryl, Martani Andrea, Mallet Maria Christina, Wangmo Tenzin, Elger Bernice Simone (2019), Factors influencing harmonized health data collection, sharing and linkage in Denmark and Switzerland: A systematic review, in PLOS ONE, 14(12), e0226015-e0226015.
Stay fit or get bit - ethical issues in sharing health data with insurers’ apps
Martani Andrea, Shaw David, Elger Bernice Simone (2019), Stay fit or get bit - ethical issues in sharing health data with insurers’ apps, in Swiss Medical Weekly, (w20089), 149.
Participatory Disease Surveillance Systems: Ethical Framework
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 (2019), Participatory Disease Surveillance Systems: Ethical Framework, in Journal of Medical Internet Research, 21(5), e12273-e12273.
The inconsistent ethical oversight of healthcare quality data in Switzerland.
McLennan Stuart, Maritz Roxanne, Shaw David, Elger Bernice (2018), The inconsistent ethical oversight of healthcare quality data in Switzerland., in Swiss medical weekly, 148, 14637-14637.
Research Ethics in the European Influenzanet Consortium: Scoping Review
Geneviève Lester Darryl, Wangmo Tenzin, Dietrich Damien, Woolley-Meza Olivia, Flahault Antoine, Elger Bernice Simone (2018), Research Ethics in the European Influenzanet Consortium: Scoping Review, in JMIR Public Health and Surveillance, 4(4), e67-e67.
The challenge of local consent requirements for global critical care databases
McLennan Stuart, Shaw David, Celi Leo Anthony (2018), The challenge of local consent requirements for global critical care databases, in Intensive Care Medicine, 1-3.

Collaboration

Group / person Country
Types of collaboration
Ane Johannessen Norway (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Prof. Valérie Junod Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Prof. Bjørn Hofmann Norway (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Prof. Vincent Mooser Switzerland (Europe)
- Industry/business/other use-inspired collaboration
Prof. Christiane Pauli-Magnus Switzerland (Europe)
- Publication
Prof. Thomas Perneger Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Prof. Heiko Schuldt Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Prof. Carlo Casonato Italy (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Dr. Frédéric Erard Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Prof. Henning Müller Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
PD Dr. Tenzin Wangmo Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
Internationale Klausurwoche: “Own Data. Systems Medicine between Sovereignty and Solidarity” Talk given at a conference Health data ownership in Switzerland. 15.03.2021 Erlangen (moved online), Germany Martani Andrea;
Personalized and Precision Medicine International Conference 2020 Poster Structural racism in precision medicine: all patients are equal but some are more equal than others 19.02.2020 Munich, Germany Geneviève Lester, Darryl; Elger Bernice; Martani Andrea;
SGBE-Seminar für bioethische Forschung/Séminaire SSEB de recherche en éthique biomédicale Talk given at a conference Advancing SMart solutions and eliminating barriers for the Acquisition, Analysis, and Sharing of Health data in Switzerland [SMAASH]: Defining priority areas 28.11.2019 Bigorio -TI, Switzerland Geneviève Lester, Darryl; Elger Bernice; Martani Andrea;
Neue ethische Herausforderungen in der datenreichen Forschungsmedizin: ein Ländervergleich Talk given at a conference Secondary use of data for research purposes: Should there be different consent requirements for genetic and non-genetic data? 16.10.2019 Munich, Germany Martani Andrea;
33rd European Conference On Philosophy Of Medicine And Health Care. Philosophy At The Edge Of Medicine Talk given at a conference Money for monitoring: the ethical challenges posed by data-sharing with health insurance apps 07.08.2019 Oslo, Norway Martani Andrea; Elger Bernice;
Dignity, Democracy, Diversity XXIX IVR World Congress. Talk given at a conference Digital pills and fitness apps: a critical perspective on how “digitalizing” healthcare might affect human dignity. 07.07.2019 Luzern, Switzerland Martani Andrea;
Le (in)Certezze del Diritto Talk given at a conference I dati ed il diritto: sfide presenti e future 17.01.2019 Trento, Italy Martani Andrea;
14th World Congress of Bioethics (WBC) Poster Data protection regulation: from barrier to facilitator of data sharing in healthcare 05.12.2018 Bangaluru, India Geneviève Lester, Darryl; Martani Andrea; Elger Bernice;
Wennberg International Collaborative Spring Policy Meeting Talk given at a conference The spectrum of ethical issues in a Learning Health Care System: a systematic qualitative review 13.04.2018 Zurich, Switzerland McLennan Stuart Roger;


Self-organised

Title Date Place
Research does not happen in a vacuum: a reflection on the health care system 18.03.2019 Basel, Switzerland

Knowledge transfer events

Active participation

Title Type of contribution Date Place Persons involved
A giant with feet of clay? The concept of personal data as a (precarious) backbone for data governance Talk 17.11.2021 UWE Bristol (Online), Great Britain and Northern Ireland Martani Andrea;
Structural racism in precision medicine Talk 29.10.2021 University of Nottingham (Online), Great Britain and Northern Ireland Geneviève Lester, Darryl;
diss:kurs Talk 19.11.2020 Basel (online), Switzerland Martani Andrea;
Pizza, Philosophy and Science: Gesundheitsdaten Talk 17.06.2020 Basel (online), Switzerland Martani Andrea;


Self-organised

Title Date Place
Ethical Issues by the Datafication of Healthcare 24.06.2021 Basel (online), Switzerland
Contemporary debates in Bioethics: Smarter Healthcare, the Ethics of Health System Efficiency 17.09.2018 Basel - University Hospital, Switzerland

Communication with the public

Communication Title Media Place Year
Talks/events/exhibitions Ethical Issues by the Datafication of Healthcare International Western Switzerland Italian-speaking Switzerland German-speaking Switzerland 2021
Talks/events/exhibitions Structural racism in precision medicine International 2021
Talks/events/exhibitions diss:kurs Italian-speaking Switzerland Western Switzerland German-speaking Switzerland International 2020
Media relations: print media, online media Health-care inequality could deepen with precision oncology Nature International 2020
Talks/events/exhibitions Pizza, Philosophy and Science: Gesundheitsdaten German-speaking Switzerland International 2020

Abstract

Valid and comparable data, including outcome, diagnosis, treatment, risk factors etc., are an important means to reduce over- and underuse of resources in a smarter health care system. Acquisition, analysis, and sharing of such data is a priority on the agenda of 2016 and beyond. In the US, a number of initiatives are taking place to coordinate and harmonize high quality collection and analysis of health data to enable precision medicine and to rationalize treatment of chronic diseases. The aim is to obtain comprehensive comparative data for evidence-based public health and health care. In order to advance smarter medicine, in the US a number of data collection initiatives exist where data from ambulatory or inpatient hospital care is collected routinely and helps to identify better measures and to answer critical questions in the clinical research agenda. Examples are the outpatient clinical registry called “Guideline Advantage (TGA)”, or the National Hospital Care Survey NHCS and National Hospital Ambulatory Medical Care Survey, NHAMCS. To improve evidence-based, smart health care, data from various hospitals, ambulatory care providers, researchers and insurance companies should be combined. Thus, the concept that collection and analysis of health data can remain the task of “a single investigator in a single laboratory for a single purpose” needs to be abandoned. Integrating such local and national data into a coherent network of resources and infrastructure that allows for the efficient and ethical sharing of data, as recommended by the NIH, is urgently needed in Switzerland. At present, data collecting entities tend to prefer using their own clinical or other indicators for success and outcome which is a clear weakness for the Swiss health care system. Efforts are urgently needed to improve (i.) standardization and comparability of data and indicators, (ii.) availability of data from different sources including insurance companies, (iii.) increased veracity and (iv.) completeness of data, comprising the routine collection of valid health and quality indicators. Within and across countries, collaborative acquisition and analysis of comparable health data (and biological samples) is hampered by a number of barriers. In comparison to other European countries and the US, Switzerland is lagging behind. While some barriers, such as the cantonal structure, are evident, others are yet unknown and need urgently to be assessed in more detail, in order to enable smarter health care in Switzerland. The present project will build on previous experience of the two main applicants. BE has worked on barriers to sharing concerning genetic databanks and TP is an expert in health care quality control and evaluation. The aim of this project is to provide urgently needed knowledge on how to overcome barriers to implement high quality, comparable health data collection in Switzerland. The study is at the same time an intervention towards the facilitation of smart data collection as it will not only obtain knowledge, but make key stakeholders and decision makers aware of the need for harmonized good quality data and involve them actively in the search for solutions to overcome barriers.Objectives, methods and study parts are the following:i.Identify success mechanisms, barriers and needs in Switzerland: using a literature search and theoretical analysis, we will describe factors that facilitated past success stories of harmonized health data collection in Switzerland (e.g. HIV-cohort, SAPALDIA, CHUV-biobank), analyse what is known about barriers, and identify needs in Switzerland, e.g. types of needed data, including harmonised tools and indicators used abroad and susceptible to be useful in Switzerland. This includes an assessment of legal and ethical barriers.ii.Explore success factors in other countries: semi-structured interviews will be conducted with approximately 15-25 decision makers and experts in institutions that developed efficient data collection tools in other countries, including those with health care systems comparable to Switzerland. iii.Understand decision makers and key stakeholders’ attitudes and knowledge to identify barriers and propose concrete solutions via a Delphi process: semi-structured interviews will be carried out with 20-30 hospital directors, hospital data managers, insurance company representatives and other stakeholders involved in or influencing collection of relevant data in Switzerland and 20-30 health data researchers and Swiss data experts. The Delphi approach will be concluded using a questionnaire and workshops that extend into part iv.iv.Inform and disseminate findings: this objective is already integrated in part iii. as experts and stakeholders will not only be asked about their experience and attitudes, but also informed about needs and facilitators identified in parts i. and ii. Study results will also be disseminated through the usual scientific vectors (conferences, publications etc.).v.Based on expert consensus, produce concrete, detailed and practically useful recommendations to inform policy makers how to reduce barriers and further good quality health data collection in Switzerland.
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