Shifting the balance of power - the role of bottom-up data institutions

Data stewardship - or the role of data institutions - has caught the attention of government and policy makers, given that the top private companies in the world are now technology companies that effectively use data to both provide services and bring in revenue. 

Unlike traditional commodities, data has unique attributes that mean it can typically be reused again and again for little economic cost, making it a very attractive opportunity. However, how data is governed - and who has ownership - has also caught the attention of the public, given high profile scandals (such as Cambridge Analytica/Facebook). 

As such, data stewardship has sprung up in response to organizations restricting access to data, or using it inappropriately, as well as fears over who might have access to it. 

The Open Data Institute (ODI) describes data stewardship as a:

Responsible, rights-preserving and participatory concept [which] aims to unlock the economic and societal value of data, while upholding the rights of individuals and communities to participate in decisions relating to its collections, management and use.

In essence, it’s the process of deciding who has access to data, for what purpose and to whose benefit, allowing for value to be realized whilst limiting any harms. A data steward collects, maintains and shares data as appropriate. 

And as such, a data institution is, according to the ODI:

[An organization] whose purpose involves stewarding data on behalf of others, often towards public, educational or charitable aims.

However, until recently, most of the thinking around data institutions has involved governments or large organizations thinking about how they can play a role at the center - a very top-down approach. 

But a new model is emerging in the form of ‘bottom-up data institutions’, whereby these organizations empower individuals and communities to take a more active role in the stewardship of data about them or that have a vested interest in. This is the focus of a new ODI report, which looks at how these new institutions can be supported. 

Understanding bottom-up institutions 

The ODI says that there are currently three main approaches taken by bottom-up data institutions. These include: 

• Individual decision making - people making decisions individually about the data about them

• Collective decision making - people making decisions as part of a larger group 

• Delegated decision making - people delegating decision making authority to another party

What’s particularly interesting about these bottom-up idata institutions is that they effectively shift the balance of power from a central organization that dictates the terms of data use, back towards the individual or a community of interest. 

Some examples of these types of institutions, as highlighted by the ODI, include: 

• Variant Bio - works with historically marginalized group, where communities are engaged with before projects begin, and data is used within a framework that takes into account community concerns

• Driver’s seat - an independent, driver-owned cooperative, where data is used to derive insights that help them optimize performance

• Open Humans - an organization that empowers individuals and communities to explore and share personal data for the purposes of education, health and research

• MIDATA - allows users to contribute to medical research and clinical studies by granting selective access to their personal data

It’s worth noting that bottom-up data institutions have been particularly valuable during the COVID-19 pandemic, such as the ZOE COVID Study, which saw people collect data about their health and make it available for researchers to map the progression of the novel Coronavirus. 

The ODI cites numerous benefits to these institutions, including providing new incentives for sharing data, building trust in data use, reducing costs and increasing competition, unlocking data for public causes, and mitigating harms through participation. 

Building government support

The British Government in recent years has ramped up its data ambitions, as it seeks to ‘unlock the value of data across the economy’. This has resulted in the creation of a National Data Strategy, which aims to ‘create an environment that supports existing data institutions’. 

However, the ODI notes that when it comes to bottom-up institutions, the government could do more to help them grow further. It has identified four areas that could support this new area of data stewardship. These include: 

• Knowledge - the ODI argues that the evidence base on bottom-up data institutions and the size of the potential market opportunity they represent is limited. More could be done to better understand how to scale these organizations, safely. 

• Trust - this new type of instruction needs to be trusted by the individuals and the communities that use them, but there is evidence, says the ODI, that users are likely to be wary of new or unproven approaches to data stewardship. Government could work on providing a legal definition for bottom-up institutions and introducing a register of these organizations. 

• Rights - bottom-up institutions often rely on the contribution of user data through the exercise of data portability rights, but these are currently limited in UK and European law. Governments need to enhance rights to data portability. 

• Infrastructure - technological infrastructures required for bottom-up data stewardship aren’t always available. The government could support the development of shared technological infrastructure - through funding, piloting and testing - to help these organizations grow. 

My take

This is a new and exciting area of development for data institutions and stewardship. The principles of giving people control of their data for reasons that extend beyond profit and revenue are often unexplored. Our understanding of how data can collectively be used to better our current social and economic environment is still just at the tip of the iceberg - these bottom-up data instructions are still figuring out the art of the possible. If the government wants to be a world leading data economy, it needs to not only foster those companies at the top of the ladder, but also support these grassroots developments.