Group items tagged

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.

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.

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.

The report, which the authors are aiming at European Commission lawmakers as they ponder how to shape an effective platform governance framework, proposes mandatory data sharing frameworks with an independent EU-institution acting as an intermediary between disclosing corporations and data recipients.

“Such an institution would maintain relevant access infrastructures including virtual secure operating environments, public databases, websites and forums. It would also play an important role in verifying and pre-processing corporate data in order to ensure it is suitable for disclosure,” they write in a report summary.

A market research purpose might only get access to very high level data, he suggests. Whereas medical research by academic institutions could be given more granular access — subject, of course, to strict requirements (such as a research plan, ethical board review approval and so on).