Data and Civil Society: From Possibilities to Responsibilities
A series of convenings in 10 cities around the world aims to drive conversations on using data to solve society’s toughest challenges.
This week, Stanford University’s Digital Civil Society Lab begins its “Data World Tour” with the Do Good Data / Data On Purpose conference in Palo Alto, California, to be followed by convenings in Toronto, Beijing, and Brisbane, Australia. The tour aims to kick start local conversations about the possibilities and responsibilities of using data in civil society. The Mastercard Center for Inclusive Growth is one of the tour’s global partners, along with Microsoft and Perpetual.
We spoke with one of the tour’s hosts, Lucy Bernholz, about the tour and how organizations can use digital resources safely, ethically and effectively. Bernholz is a senior research scholar at Stanford University’s Center on Philanthropy and Civil Society and director of the Stanford Digital Civil Society Lab.
Your lab, the Digital Civil Society Lab at Stanford, explores the nexus between data and civil society, which is also the focus of the Data World Tour, correct?
Yes. We look at questions like: How does our dependence on digital infrastructure and data change the way people voluntarily come together to do things for public benefit? We are particularly interested in interventions to make sure that people can continue to choose to privately act for public good. The lab brings together scholars, people from the nonprofit sector, data experts, policy makers, ethicists, and computer scientists to think about how should these tools actually work.
Tell me about the Data World Tour?
The lab does a lot of work in Australia, Brazil and China, and we thought there was an incredible opportunity to try something that, as far as we knew, had never been tried before—which was to find partners in 10 cities around the globe with robust communities of nonprofits, activists, data scientists, civic techies, scholars, and funders, and bring these folks, who often work in silos, together.
We want to spark conversations in places around the world and then attempt to build an ongoing global community of actors and scholars and data scientists and policymakers who are talking about these issues. If you are in São Paulo, Brazil, struggling with questions of using government data safely for your nonprofit, you probably have some insights that are relevant to, I don’t know, the EPA in the United States right now.
The theme of all of the tour is “possibilities and responsibilities,” and we work with local hosts to identify the most pressing issues within that frame, and bring the local voices and experts for that region to the discussion. In this way, each local conference is designed to resonate as strongly as possible while also building a global community and knowledge base of different approaches and challenges.
Tell me more about that theme “From Possibilities to Responsibilities.” And why that theme now?
There are enormous possibilities [with data]. Data and technology literally change how you can scope a problem and the ways you can address it. Every small nonprofit organization doing work with immigrants and refugees or vulnerable children has digital data now sitting on their computers – and they may want to use it to find new ways to help but they may not know how to do so.
There’s really incredible possibilities for making big change. You have enormous possibilities to see new patterns, to connect with people you’ve never connected with before, new breakthroughs. But doing so requires that you understand what it is you are using and how to credibly analyze it and protect it.
Nonprofit organizations have to understand who else has access to the information that they collect. In most cases they’re using software built by commercial firms connected to the internet– that means the data they have is sitting on servers owned by software vendors, cloud storage providers, and telecommunications companies. The nonprofit needs to know this so that it’s not storing sensitive data in places it can’t control. Most nonprofits use digital tools – from networked printers to cloud storage, but most of us individuals are really bad stewards of our own digital data. The organizations mirror the practice of the individuals who work there. Digital data is a new resource, the digital infrastructure over which those data is transmitted is a different kind of infrastructure than you are used to working with.
What are some examples of best practices around handling those responsibilities?
When Apple made it possible (through their ResearchKit) for people to opt in to allow data from their iPhone to be used for research purposes, a team of researchers from Sage Bionetworks realized the potential for the study of Parkinson’s Disease. The researchers realized that if you had tremors (a main symptom of Parkinson’s), the phone was going to capture that data. This works through something called an accelerometer in your phone, that measures the force of acceleration, whether caused by gravity or by movement like a tremor. That’s a kind of passive data that was never before collectable, but can be of enormous value to neurologists.
But researchers had to make the process of donating data understandable, safe and something that people will want to participate in. Sage Bionetworks, a nonprofit based in Seattle, built an app that would help researchers deal with these key questions of consent, data proxies, data consumption, and data destruction that affect everyone. Their goal was to build a truly informed consent process that is different than how we mostly interact with the digital world.
The other thing that’s important is that the app lets researchers and participants decide what data their phone collects to share with the study.
More than 9000 people have participated in the study, making it one of the larger research studies done to date on Parkinson’s.
In other words, the possibilities and the responsibilities must go together. The researchers had access to data but they also had to ensure that it was collected and used ethically and safely.
Right. In realizing that these responsibilities and possibilities go together, I think there’s an extraordinary opportunity for nonprofits to lead here. Nonprofit organizations can use their mission focus and ethical responsibilities to set the parameters within which society can safely innovate with data and digital infrastructure to solve social problems. They can set the standard. Sage Bionetworks and others, they are standard-setting.
Can data-driven philanthropy mitigate some of the disruptions we’re seeing today in the world, whether from the changing nature work, income inequality to the refugee crisis?
Hunger is not a new problem, refugees are not new, but there is new insight to be gathered here. For almost any issue, there are digital data sets that are being created, either passively or actively, that may afford some new insights for how we proceed. The possibility of finding new insights about long-term societal challenges is real.
The Data World Tour begins this week at Stanford and stops in Toronto at the end of February, Beijing in March, Europe, and the U.K. in June, Australia in the summer and South America in the early fall. Organizers are also working on stops in India, South Africa or Kenya.
Featured Photo Credit: Getty Images