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The age of big data has created valuable resources for public-benefit outcomes such as healthcare. The speed with which scientists have responded to the COVID-19 pandemic—faster than any other disease in history—in the last 18 months has demonstrated the benefits of collecting, sharing and extracting value from data for a broader benefit.

Access to data from the medical records of 56 million NHS patients has enabled public health researchers in the UK to provide some of the strongest data on risk factors for covid mortality and the characteristics of long-term covid, while access to sensitive health records has been accelerated by Moderna and Pfizer development of life-saving medical treatments, such as produced messenger-RNA vaccines.

But balancing the benefits of data sharing with the protection of individual and corporate privacy is a delicate process, and rightly so. Governments and businesses are collecting more and more data, spurring investigations, privacy concerns, and calls for stricter regulation.

“Data increasingly powers innovation and must be used for the public good while protecting personal privacy. “This is a new and unconventional field for policymaking and requires a careful approach,” said David Deming, professor and director of the Malcolm Wiener Center for Social Policy at Harvard Kennedy School. latest New York Times article.

Increasing number of startups – about 230 and increasing by number Data Collaborators— they help empower citizens, nonprofit groups and governments to have more control over their data.

These initiatives adopt legal and institutional structures such as data trusts, cooperatives and stewards to provide individuals and organizations with the means to collect and use relevant data effectively and securely. Big Tech’s control over the data economy.

“The relationship between data and society is fundamentally broken,” says Brighthive CEO Matt Gee, who helps networks and organizations create alternative models of governance, including data trusts, data partners and data cooperatives.

“We think that it should be more collaborative rather than competitive, more open and transparent, more distributed and democratic instead of monopolistic. This way we make gains fairer and reduce harmful biases in the data.”

Access and control

As the pandemic has shown, medical research and public health planning can be enriched through access to electronic health records, prescription and drug data, and epidemiology. But health data is also highly sensitive and there is understandable public scrutiny over efforts to share it. It requires a new governance framework, called ‘secondary use’, that applies personal health information for uses other than healthcare delivery.

Findata is an independent authority at the Finnish Institute of Health and Welfare, which was established by a government act in May 2019. The agency facilitates researchers’ access to Finnish health data, grants permissions to use or responds to certain statistical requests. In doing so, it seeks to protect the interests of citizens while at the same time recognizing the value their data can offer to medical research, teaching and health planning.

Prior to the creation of Findata, it was costly and complex for researchers to access this vital research resource. “The aim of this agency is to facilitate and secure the use of health data,” explains Johanna Seppänen, director of Findata.

“Previously, if you wanted data from different registries or hospitals, you had to apply for data separately from each controller, and there was no standard way of handling it, no way to set prices. It was very time consuming, difficult and confusing.”

Findata is by far the only institution of its kind, but it can safely and securely inspire other countries to derive more value from their health data.

England’s NHS recently faced off push back from privacy campaigners on reforms to improve data sharing for public health planning, illustrating the challenges that may arise from attempts to change data collection and sharing protocols.

Empowerment and autonomy

Helping disenfranchised individuals and groups has been another focus area of ​​new data governance organizations.

data officersFrom community-based collectives to public or private organizations, they “serve as both intermediaries and guardians during data exchange, thereby supporting individuals and communities to better navigate the data economy and negotiate data rights better,” says the strategy. and partnerships are partners in Aapti, an organization working on the intersection of technology and society with a focus on data rights.

An example of where data clerks can be useful is for individuals in the gig economy, a rapidly growing labor market characterized by the prevalence of short-term contracts or freelance work as opposed to permanent jobs. power inequalities

“Asymmetric control of data is one of the primary levers of power that gig platforms use to manage their workforce and shape the narrative and public policy in the arena in which they operate,” says Hays Witt, co-founder and CEO of Driver’s Seat. A driver-owned data cooperative that specializes in picking up vehicles.

“Few stakeholders, especially concert workers, have access to the data they need to engage in productive and constructive ways. our premise [at Driver’s Seat] Witt says: Let’s use technology and data cooperative to empower gig workers to collect, collect and share their data.

Driver’s Seat has developed a proprietary application where employees can submit location, job and earnings information, which can then be collected and analysed. Drivers then receive insights that help them understand their true earnings and performance, and inform their choices about where, when, on which platforms and under what conditions to work.

Driver Seat develops tools that can tell drivers their average real wages on platforms in their city, compare their wages with averages, and tell them if their wages are increasing. All of this can help drivers move to platforms that offer them a better deal and empower an otherwise atomized workforce.

“Our drivers are really excited to be busy because their daily experience sees metrics that they don’t trust that are fed back to them by platforms,” Witt says. “They know that metrics are influential, their daily experience is all mediated by data. It affects their earnings and their lives, and they know it.”

Witt believes that in the future workers can increasingly contribute crowdsourced information to develop “collective analyzes of their problems”; which means they can come up with collective policy solutions or agreements to negotiate with the employment platform.

Balancing social mission and business models

All data initiatives, whether government-approved organizations like Findata or entrepreneurial businesses like Driver’s Seat, face the challenge of balancing their mission with operational sustainability.

Securing a sustainable financial foundation is a huge challenge for nonprofit groups and businesses with social impact. For data equality bodies, the funding mix often includes community and membership-driven approaches and charitable giving.

But some organizations, such as Brighthive, have found win-win models where private sector companies want to improve data governance and are willing to pay for it.

Brighthive’s Gee describes business customers who have seen what’s happening around AI regulation in the European Union and want to get ahead of it in the US. They take a proactive stance on issues such as algorithmic transparency, equity controls, and an alternative governance model for how they use customer data.”

Other data equality platforms have found revenue models where beneficiary data can be used by third parties in socially positive ways. Hays Witt in the Driver’s Seat gives the example of city officials and planning agencies.

Both authorities and drivers waiting for the vehicle have an incentive to reduce the “dead time” when a driver wanders around without making money, causing emissions and congestion. If appropriate data can be collected, aggregated and usefully analyzed, it can lead to better traffic and mobility decisions and infrastructure interventions. Thus, all participants benefit.

Witt points to other “neutral” situations where beneficiary data can be valuable to unrelated private sector organizations in ways that don’t go against the interests of drivers. He cites the example of commercial real estate developers who are often forced to make decisions about investments and services based on out-of-date traffic and mobility data.

Driver’s Seat is exploring opportunities to offer aggregate analytics products to such companies, whose proceeds are returned as dividends to gig workers, and help fund the cooperative.

Many data startups seeking sustainable income opportunities must decide where to draw the line in terms of the type of business they want to undertake or the type of business they want to work with.

Brighthive’s Matt Gee points to increased investor interest in initiatives that could help companies eventually navigate “cookies” that are critical to third-party advertising but are now phased out. “Investors are worried about the death of third-party data and are hungry for companies that address it,” he says.

But as socially minded startups get more business from corporate clients, they need to balance their social benefit mission with the financial rewards of lucrative contracts.

“Is being a public good company more about what you do and how you do it or who you work with? Are we actually reducing societal harm if we work on a data collaborator that provides transparency and accountability for marketing organizations that aggregate customer lists? These are questions our team is constantly grappling with,” says Gee.

Data initiatives will inevitably face challenges, including balancing social mission, ethics and business models, but as the data economy continues to grow, they are in a unique position to find new ways to responsibly leverage the insight data can provide to citizens. organizations and governments – are taking some of the power over data away from Big Tech.

“Our data economy needs to be based on creating value for everyone in society, and this requires that user control, trusted agency and collective governance be embedded in innovative data management models,” says Sushant Kumar, chief technology officer at social change initiative Omidyar. Network.

“Recruiting a critical user base, obtaining regulatory support and ensuring financial sustainability will also ensure that these designs are successful in disrupting the status quo and injecting justice into the current paradigm.”

This content is produced by Insights, the exclusive content arm of MIT Technology Review. It was not written by the editorial staff of MIT Technology Review.