Project

Discipline

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

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

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

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

Natural persons

Active participation

Self-organised

Active participation

Self-organised

Communication	Title	Media	Place	Year

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.