The era of big data has created valuable resources for the achievements of public interest such as health care. In the past 18 months, the speed at which scientists have responded to the covid-19 pandemic-faster than any other disease in history-has demonstrated the benefits of collecting, sharing, and extracting value from data to achieve greater Broad interests.
Access to data from 56 million National Health Service (NHS) patient medical records allows public health researchers in the UK to provide some of the strongest data on COVID-19 mortality and long-term COVID-19 characteristics, and speed access to health records To develop life-saving medical therapies, such as messenger RNA vaccines produced by Moderna and Pfizer.
However, striking a balance between the benefits of data sharing and protecting the privacy of individuals and organizations is a delicate process-and it is a matter of course. Increasingly, governments and companies are collecting large amounts of data, which has triggered investigations, concerns about privacy, and calls for stricter supervision.
“Data is increasingly driving innovation. It needs to be used in the public interest while protecting personal privacy. David Deming, professor and director of the Malcolm Wiener Center for Social Policy at Harvard Kennedy School, in an article It writes that this is a new and unfamiliar area for policy making and needs to be handled with care. Recent articles in the New York Times.
More and more start-up companies—about 230, and it’s still increasing. According to statistics Data collaboration-Is being formed to help citizens, non-profit organizations and governments gain more control over their data.
These startups are adopting legal and institutional structures such as data trusts, cooperatives, and administrators to help people and organizations collect and use relevant data effectively and safely, and take responsibility in the process Big Tech’s control of the data economy.
“The relationship between data and society is fundamentally broken,” said Matt Gee, Brighthive’s CEO. The company helps networks and organizations establish alternative governance models, including data trust, data sharing, and data cooperation.
“We think it should be more collaborative rather than competitive, it should be more open and transparent, and it should be more decentralized and democratic rather than monopolistic. This is how we make gains fairer and reduce harmful biases in the data.”
Access and control
As demonstrated by the pandemic, medical research and public health programs can be enriched by accessing electronic health records, prescription and drug data, and epidemiology. But health data is also highly sensitive, and it is understandable for the public to review efforts to share this data. The so-called “secondary use”, that is, the application of personal health information for purposes other than health care services, requires a new governance framework.
Finddata is an independent institution of the Finnish Institute of Health and Welfare, established under a government bill in May 2019. The agency facilitates researchers to access Finnish health data, issue licenses or respond to specific statistical requests. The purpose of this is to protect the interests of citizens while also appreciating the value that their data can provide for medical research, teaching, and health planning.
Before Findata was founded, it was expensive and complicated for researchers to access this important research resource. “The purpose of the agency is to simplify and protect the use of health data,” explains Johanna Seppänen, director of Findata.
“Previously, if you wanted to obtain data from different registries or hospitals, you had to submit four applications, and there was no standard processing method, and there was no way to determine the price. This is very time-consuming, difficult and confusing.”
Findata is the only such institution to date, but it may inspire other countries that want to realize more value from health data in a safe and reliable manner.
Britain’s NHS recently faced push back The reforms from privacy activists to improve public health planning data sharing demonstrate the challenges that may arise from attempts to change data collection and sharing protocols.
Empowerment and autonomy
Helping individuals and groups deprived of their rights has been another focus area of the new data governance organization.
Data managerSuha Mohamed said-from community collectives to public or private organizations-act as “intermediaries and guardians in the data exchange process, thereby supporting individuals and communities to better manage the data economy and better negotiate their data rights”, strategies and The partnership works with Aapti, an organization dedicated to the intersection of technology and society, focusing on data rights.
One example that data stewards can prove useful is individuals in the gig economy, a fast-growing labor market characterized by the prevalence of short-term contracts or freelance jobs rather than permanent work, and is riddled with power inequality.
Hays Witt, co-founder and CEO of Driver’s Seat, said: “Asymmetric control of data is one of the major power levers used by gig platforms to manage its workforce and shape narrative and public policy on the stage of its operations.” A data cooperative owned by drivers engaged in online car-hailing services.
“Very few stakeholders have access to the data they need to participate in a productive and constructive way, starting with gigs themselves. Our premise [at Driver’s Seat] Yes: Let us use technology and data cooperatives to empower gig workers to collect, aggregate and share their data,” Witt said.
Driver’s Seat has developed a proprietary application through which employees can submit their location, work and income information, and then aggregate and analyze this information. Drivers will then gain insights to help them understand their true income and performance, and inform them of their choice of where, when, on which platform and under what conditions to work.
Driver’s Seat is developing tools that can tell drivers the average real wages across platforms in their cities, compare their wages with the average, and tell them whether their wages have risen or fallen. All of these can help drivers switch to a platform that provides them with better transactions, empowering the originally dispersed labor force.
“Our drivers are very happy to be able to participate, because their daily experience is to see indicators of their distrust that are fed back to them by the platform,” Witt said. “They know that indicators are influential, and their daily experience is completely adjusted by data. This will affect their income and life, and they know that.”
Witte believes that in the future, workers will increasingly be able to contribute to crowdsourcing information to “conduct collective analysis of their problems, which means that they can propose collective policy solutions or agreements and negotiate with employment platforms.”
Balance social mission and business model
All data startups, whether they are government-approved institutions such as Findata, or startups such as Driver’s Seat, face the challenge of balancing mission and operational sustainability.
Ensuring a sustainable financial foundation is a major challenge facing non-profit organizations and socially influential companies. For data fairness agencies, the funding portfolio usually includes community- and member-driven methods as well as charitable assistance.
But some organizations, such as Brighthive, have found a win-win model, and private sector companies are seeking to improve data governance and are willing to pay for it.
Brighthive’s Gee describes business customers who “have seen what is happening in the EU around AI regulation, and they want to lead the United States. They are proactive on issues such as algorithm transparency, equity audits, and alternative governance models that use customer data. Position.”
Other data fairness platforms have found revenue models in which third parties can use beneficiary data in a positive way. Hays Witt in the driver’s seat cited examples of municipalities and planning agencies.
Both the authorities and online ride-hailing drivers are motivated to reduce the “dead time” that drivers cycle without making money, leading to emissions and congestion. If appropriate data can be collected, aggregated, and analyzed in a useful way, better transportation and mobility decisions and infrastructure interventions can be made. Therefore, all participants benefit.
Witt points to other “neutral” cases in which beneficiary data may be valuable to unrelated private sector entities in a way that does not violate the interests of drivers. He cited the example of a commercial real estate developer who is often forced to make investment and service decisions based on outdated traffic and mobile data.
Driver’s Seat is exploring opportunities to provide these companies with aggregated analysis products, return income as dividends to gig workers, and help fund cooperatives.
Many data startups seeking sustainable income opportunities need to decide where to draw the line based on the type of work they are willing to do or the type of business they are willing to work with.
Brighthive’s Matt Gee pointed out that investors are increasingly interested in startups that can help companies navigate the end of “cookies”, which are essential for third-party advertising, but are now being phased out. “Investors are worried about the demise of third-party data and are eager for companies to solve this problem,” he said.
However, as socially conscious startups get more business from corporate customers, they need to strike a balance between their mission of social welfare and the financial benefits of lucrative contracts.
“Being a nonprofit company is more about what you do and how you do, or who do you work with? If we are committed to providing transparency and accountability data collaboration for marketing organizations to collect customer lists, are we actually Reducing social harm? These are the problems that our team has been working hard to solve,” Gee said.
Data startups will inevitably face challenges, including balancing social missions, ethics, and business models, but as the data economy continues to grow, they are in a unique position to open up new ways to use data responsibly for citizens The insights, organizations, and governments—some of the power to seize data from large technology companies.
“Our data economy needs to create value for everyone in society, which requires user control, trusted intermediaries, and collective governance to be embedded in innovative data management models,” said Sushant Kumar, head of technology at Omidyar, a social change company.
“Attracting a large number of users, gaining regulatory support and achieving financial sustainability will also ensure that these designs successfully break the status quo and inject fairness into the current paradigm.”
This content was produced by Insights, the custom content division of MIT Technology Review. It was not written by the editors of MIT Technology Review.