it enables people to contribute data about them to it and, on a case-by-case basis, people can choose to permit third parties to access that data. This is the pattern that many personal data stores and personal data management systems adopt in holding data and enabling users to unlock new apps and services that can plug into it. Health Bank enables people to upload their medical records and other information like wearable readings and scans to share with doctors or ‘loved ones’ to help manage their care; Japan’s accredited information banks might undertake a similar role. Other examples — such as Savvy and Datacoup — seem to be focused on sharing data with market research companies willing to offer a form of payment. Some digital identity services may also conform to this pattern.
Patterns of data institution that support people to steward data themselves, or become ... - 0 views
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it enables people to contribute data about them to it and, on a case-by-case basis, people can choose whether that data is shared with third parties as part of aggregate datasets. OpenHumans is an example that enables communities of people to share data for group studies and other activities. Owners of a MIDATA account can “actively contribute to medical research and clinical studies by granting selective access to their personal data”. The approach put forward by the European DECODE project would seem to support this type of individual buy-in to collective data sharing, in that case with a civic purpose. The concept of data unions advocated by Streamr seeks to create financial value for individuals by creating aggregate collections of data in this way. Although Salus Coop asks its users to “share and govern [their] data together.. to put it at the service of collective return”, it looks as though individuals can choose which uses to put it to.
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it enables people to contribute data about them to it and decisions about what third parties can access aggregate datasets are taken collectively. As an example, The Good Data seeks to sell browsing data generated by its users “entirely on their members’ terms… [where] any member can participate in deciding these rules”. The members of the Holland Health Data Cooperative would similarly appear to “determine what happens to their data” collectively, as would drivers and other workers who contribute data about them to Workers Info Exchange.
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Business models for sustainable research data repositories | OECD - 3 views
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However, for the benefits of open science and open research data to be realised, these data need to be carefully and sustainably managed so that they can be understood and used by both present and future generations of researchers. Data repositories - based in local and national research institutions and international bodies - are where the long-term stewardship of research data takes place and hence they are the foundation of open science. Yet good data stewardship is costly and research budgets are limited. So, the development of sustainable business models for research data repositories needs to be a high priority in all countries.
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The 47 data repositories analysed reported 95 revenue sources. Typically, repository business models combine structural or host funding with various forms of research and other contract-for-services funding, or funding from charges for access to related value-added services or facilities. A second popular combination is deposit-side funding combined with a mix of structural or host institutional funding, or with revenue from the provision of research, value-added, and other services.
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Research data repositories themselves can take advantage of the underlying economic differences between research data, which exhibit public good characteristics, and value-adding services and facilities, which typically do not, to develop business models that support free and open data while charging some or all users for access to value-adding services or related facilities
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