The rise of bottom-up data institutions
At the Open Data Institute (ODI), we describe ‘stewarding data’ as making important decisions about who has access to data, for what purposes and to whose benefit, to realise the value and limit the harm that data can bring. Data institutions are organisations that steward data on behalf of others, often towards public, educational or charitable aims.
Bottom-up data institutions are those which empower people to play a more active part in stewarding data about themselves or that they have a vested interest in.
These data institutions use participatory methods to enable individuals and communities – usually those that have generated the data or that the data is about – to exercise greater control over the collection, maintenance and sharing of data.
Existing examples of bottom-up data institutions include:
- Variant Bio works with historically marginalised populations, where communities are engaged prior to the beginning of research projects, and the data is collected and used within a framework that takes into account community concerns.
- Driver’s Seat is an independent, driver-owned cooperative where members’ data is used to derive insights that help them optimise their performance.
- Open Humans empowers individuals and communities to explore and share their personal data for the purposes of education, health and research.
- MIDATA enables users to contribute to medical research and clinical studies by granting selective access to their personal data.
- Gyeonggi Data Dividend ensures that any financial profits generated by selling access to data about transactions using the local currency are returned to citizens in the form of a dividend.
What can governments do to help?
Bottom-up data institutions are a relatively nascent field, but we think they have the potential to address data harms while unlocking new uses of data for public good.
Over the course of our research for this report, we identified four areas that need to improve if bottom-up data institutions are to further grow:
- Knowledge – The existing evidence base on bottom-up data institutions and the size of the potential market opportunity they represent is limited.
- Trust – Bottom-up data institutions need to be trusted by the individuals and communities that use them, but there is some evidence that users are likely to be wary of new or unproven approaches to data stewardship.
- Rights – Bottom-up data institutions often rely on the contribution of user data through the exercise of data portability rights, but these are limited in UK and European law.
- Infrastructure – The technological infrastructures required for bottom-up data stewardship aren’t always available.
Our report suggests mechanisms that the UK government and other policymakers could draw on to address these issues and create an enabling environment for bottom-up data institutions, such as introducing a register, enhancing rights to data portability or supporting the growth of an assurance sector for bottom-up data institutions.
Read the report
This study is part of our ongoing effort to increase awareness and understanding of data institutions among policymakers, funders and others. We hope that our findings indicate some potential routes for future policy development that the UK government and other policymakers can draw on to create an enabling environment for data institutions to thrive. Future work in the ODI’s data institutions programme will aim to build on this research, further developing our understanding of the mechanisms discussed in this report and how they might be implemented.