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Understand sensitive data and the challenges of using it in biomedical research

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Services to support research using sensitive health related data

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Feasibility and Findability

Exploring feasibility and finding data sources are the first steps of planning a research project.

For prospective medical research studies, it is important to know, for instance, how many patients with certain characteristics are treated in a hospital over a defined period of time. This information facilitates study design decisions including number of patients, number of sites to include, and timelines for patient recruitment. For a retrospective study, it is important to know what and where data exists that is potentially useable for research.

To promote both feasibility analysis and findability of data according to the FAIR principles, SPHN is working on the following two projects, which will facilitate multi-site collaborations in Switzerland:

SPHN Federated Query System

One of the key components of the Swiss Personalized Health Network (SPHN) is a Federated Query System. The aim of the query system is to allow researchers to assess, whether and where patients or patient data potentially suitable for a specific research question exists at Swiss University Hospitals (UHs).

The SPHN Federated Query System allows queries on anonymized and nationally harmonized data coded in national or international terminologies. The system enables researchers to verify the feasibility of their project by running simple queries against a subset of clinical data of all UHs, and it allows the design and optimization of inclusion and exclusion criteria for study protocols without transferring any patient data. These queries may include demographic information (age and gender), diagnosis (ICD-10), procedures (CHOP), medication (ATC) and lab results (LOINC and UCUM). Overall, the system includes 80 Mio data points from 470'000 patients, who signed the general consent.

The SPHN Federated Query System relies on the Patient Network Explorer Technology of Clinerion. It is accessible for authorized users through the BioMedIT Portal. Eligibility requirements for users are:

Their institution has signed an agreement with SIB (currently, all Swiss University Hospitals are part of this network, additional institutions will have the possibility to join at a later time point)
Each user has signed an Access and Use Policy

Swiss Cohort Consortia @Maelstrom catalogue

The Swiss Cohort Consortia is a network of Swiss cohorts available on the internationally renowned Maelstrom metadata catalogue.

The Maelstrom catalogue relies on a powerful cataloguing toolkit to improve the findability and usability of cohort data. It already serves the metadata dissemination needs of more than 370 cohorts/studies across the world, which are grouped into several international networks. Maelstrom provides a user-friendly web-based solution for data discovery, including searchable information about socio-demographic, clinical data, lifestyle and behaviours, personality and psychological measure, and much more.

The Swiss Cohort Consortium contains the following 10 cohorts:

Cohorte Lausannoise (CoLaus)
The Psychiatric arm of the population-based CoLaus study (PsyCoLaus)
Swiss HIV Cohort Study (SHCS)
Swiss Kidney Project on Genes in Hypertension (SKIPOGH)
Swiss Cohort Study on Air Pollution, Lung & Heart Diseases (SAPALDIA)
Swiss Transplant Cohort Study (STCS)
Lausanne Cohort 65+ (Lc65+)
Swiss Inflammatory Bowel Disease Cohort Study (SIBDCS)
Swiss Systemic lupus erythematosus Cohort Study (SSCS)
Swiss Clinical Quality Management in Rheumatic Diseases (SCQM)

Interested in adding your cohort to the SPHN Cohort Consortium Network on Maelstrom? E-mail us!