Table 1 Features of the selected online platforms for sharing of health data
From: Ethical sharing of health data in online platforms – which values should be considered?
Platform entity | Taltioni | Healthbank | MIDATA | ePGA | PEER |
|---|---|---|---|---|---|
Scope | National (Finland) | International (Based in Switzerland). | National (Based in Switzerland) | International (based in Greece). | International (based in United States) |
Sector | Public-private. Finnish government; Member organisations (public and private). | Private. Investments of partners and members/users. | Public –private. Research grants, loans. | Public. Public grants (EU and Greece). | Public-private. Public and private funds, Crowdsourcing. |
Primary goal | Health data sharing. Health data safe storage and management; well-being apps. | Health data sharing and health research. Safe storage; research; user initiated selling of health data. | Health data sharing and health research. Data safe storage and management; research; data sharing; third-party services (for-profit) on data made accessible by members. | Health research. Genome-based recommendations about gene-drug-phenotype interactions open access pharmacogenomics data. | Health data sharing and health research. Biospecimen sharing. Joining communities within the PEER platform. |
Leadership | Users and researchers-led. | Users and researcher-led. | Users and researchers-led. | Researcher-led. | Patient-led. |
Data types | Health and lifestyle related data. | Health and lifestyle related data. | All personal data. | Established genomic databases; Genomic profiles and phenotypes uploaded by users. | Health related data. |
Large scale data sharing | No. | Yes. | Yes. | Yes. | Yes. |
Participatory features | Users can decide which data sets to share and with whom. | Users decide which data sets to share and with whom. The data available is uploaded by the users. | Users decide which data sets to share. Users can give specific third- parties access to run analyses on their data on the platform. | Data is uploaded by the users. | Users decide which data sets to share and with whom. |
ICT innovative solutions | Focus on personalisation: tailor usage according to individual needs. | Works like a bank: users invest their data and collect the profit from their usage in research. | Enables the combination of health data with other personal data. It is possible to release all the data to researchers. | Orientated for supporting health professionals to increase their knowledge in genomics and to support them in providing appropriate healthcare. | Enrolment on patient networks while allowing contributions for accelerating health research. |