Developing Alternative Data Sharing Models
A breakout group during the civic digital trust workshop discussed alternative ways to share data other than through a trust. Workshop participants and secondary research has identified the following options.
There are many existing models for how to agree the use of data between multiple private and public organizations and all of which have many variations specific to the situation. For the purpose of briefly comparing alternatives to a data trust we shall simplify somewhat by thinking about how different models vary based on:
- 1.How the data use agreements are structured in terms of the interests of one party versus being structured in the interests of many parties or the wider public interest
- 2.If enforcement of the terms of data use is internal to the parties to the agreement or if there is external enforcement to uphold the wider consumer or public interest
- Many data use arrangements between two single organizations are handled as data licenses allowing the other party to make use of data for a specific purpose.
- This model is framed entirely around the needs and interests to the licensor or licensee, and any public good at stake has to be captured in the application and use by the licensee.
- Enforcement of appropriate data use is only between the two parties upholding their respective interests
- Data Sharing agreements allow the exchange and use of data between multiple parties and typically include licensing provisions on IP and allowable uses by all parties using the data and any common commitments to contributing data and other resources.
- This model is framed around the collective needs of all the parties sharing data
- Enforcement of appropriate data use is only between the set of parties in the sharing agreement.
- A cooperatives, partnerships and joint ventures creates a set of agreements between participating organizations to manage the combined set of data in the interests of those contributing partners or members not just the needs of one or two organizations alone. This model extends into ensuring the business interests or outcomes are upheld and it may even create a distinct entity to manage that common interest. Agreements can become more complex in covering multiple contributing partners, their separate and joint interest in their individual IP individual and new IP form combined data and uses.
- These models are all framed around the shared needs and interests of the data contributors within the cooperative, joint venture of partnerships as well as some common goals they are all seeking to achieve be those commercial or public interest goals.
- Enforcement of use is still up to the set of parties in the data sharing agreement
- Data Collaboratives are a new form of collaboration, beyond the public-private partnership model, in which participants from different sectors — in particular private-sector actors – exchange their data to create public value. Data collaboratives are an emerging model for unlocking the value of corporate data to find new, innovative, and data-driven solutions to combat public problems.
- The agreements now become framed around the wider outcomes and beneficiaries rather than the needs of the participants themselves
- Enforcement of agreements and data use is still between the parties in the data collaborative
- Ethics boards have long been used in research situations where the use of data in the wider public or scientific interest needs to be considered and decided, where there are potential implications on individuals.
- The agreements now become framed around upholding wider ethical considerations, managing risk and undue harms as a result of data and its analysis.
- The ethics board itself may now have a direct enforcement mechanisms on the user of the data such as to halt use, remove funding or professional designations etc.
- Designated organizations are a model often used in health care or other personal record situations such as education or welfare where consent cannot always be meaningfully obtained but the data is critical to the delivery of services, such as healthcare, in the interests of the individual or when used in aggregate the population at large. In these cases specific legislation defines what those designated organizations can hold, who can have access and for what purpose and the controls that much be in place.
- The agreements that determine data and its use are framed in the interest of the individual and wider population
- Most designated organizations are subject to specific oversight and enforcement mechanisms appropriate to the nature of their work and their sector.
A Civic Data Trust would fit at the top of both spectrums. The agreements on data use are framed in interests of the wider public interest and potential data subjects or individuals who's consent cannot meaningfully be obtained in advance or for all uses. The trust model provides for an explicit enforcement mechanism against members of the trust, but additionally against the trustees if they are not acting in the interest of the beneficiaries (subject to them being able to use that enforcement).