Why We Need a Data Bill of Rights

By Steve "Spike" Spiker, Executive Director, Chief Data Officer

We, the people, need a Data Bill of Rights. More specifically, we need our state and federal governments to adopt a Data Bill of Rights. The purpose would be to guarantee that data will be used in the best interests of the people. For too long, the burden has been on the poor and the temporarily needy to seek out and find help when they need it — but that doesn’t have to be the default. A Data Bill of Rights can flip that equation, and accelerate movement toward a more just and equitable society.

It’s tax time, which means many of us are compiling financial documents and uploading a significant amount of personal information to federal and state government agencies, trusting that they will keep it safe. Most of us are hoping to get a refund as a result. If you do your own taxes, maybe in an online system, you know the excitement you feel when the screen announces, “You qualify for a $$$ additional deduction on your taxes!” It’s a beautiful moment, a good feeling: You’re going to owe less or get a bigger refund. Imagine if the excitement didn’t stop there? Imagine if you were also notified that you qualified for a program to help you put food on the table, or receive free prescription medication for your diabetes?

When you file your taxes, you hand over some of the most sensitive information you likely create in life — your data that tells the story of your last year, in expenses and income. (In my case, I am once more reminded of how expensive childcare is.) But what happens to that data? It surely doesn’t just stay on the printed page or in the file for review! The Internal Revenue Service sends signals to other agencies to verify everything from your bank transactions, employer income, unemployment income, and more. It uses many sources to validate your information — even more if you get audited.


Imagine if you were also notified that you qualified for a program to help you put food on the table, or receive free prescription medication for your diabetes?


Which brings me to ponder: how much data does the government hold on each of us already? Quite a lot if you’ve got a social security number, applied for a loan, or ever received a W-2. For the most part, it sits in databases and is protected and rarely touched, which is mostly what we all want. However, that idea represents an old form of what we expect of government — a kind of “service vending machine” is how O’Reilly Media founder Tim O’Reilly, coiner of the phrase “open source,” describes this model: taxes in, services out. A Data Bill of Rights could completely transform this model, enabling government to use data to proactively help those who need it, at the very least by connecting them to programs and services that could lift them out of poverty. The efficiency and actual cost savings could be incredible.

A Data Bill of Rights would also assert that government has a responsibility — a duty — to use our own data to help us, not hurt us. It’s not sufficient that today government is able to use multiple data sources to detect fraud and or question eligibility when it fails to use additional data sources to proactively check for eligibility in safety net programs that we could benefit from. This is the crux. Consider the burden currently placed on a family where each parent works two jobs to barely get by on minimum wage. Today we ask them to seek out possible benefits from multiple sources with multiple requirements. Instead, the burden should be on our government to do what it can as it processes data for other uses. Asking this already stretched family to take on this burden is akin to requiring high-income earners to read and interpret the tax code for themselves.


A Data Bill of Rights would also assert that government has a responsibility — a duty — to use our own data to help us, not hurt us.


This is where privacy advocates begin objecting, and I share their concerns. This isn’t something we just do overnight; we must safeguard the public’s data and protect vulnerable communities from data mis-use — that needs to be a core component of a Data Bill of Rights. As with the California Consumer Privacy Act, where all businesses that can acquire or sell your data must inform you of that practice and how you can opt out, a Data Bill of Rights should provide clear, public information about how they proactively use our data to help us.

Could this even happen? We know that government can work across silos when it wants to, and we know from our own research that government agencies can and are often required to share data across federal and state agencies. So yes, it can be done. We should do this incrementally, not as one enormous project. But we need to start by taking steps in this direction.


Government agencies can and are often required to share data across federal and state agencies. So yes, it can be done.


In fact, it’s already happening. As of 2020, Maryland’s state health insurance system “will use data collected from state tax filings to complete a preliminary assessment of whether a person is eligible for Medicaid, CHIP, or a federal tax credit. The person will then be provided a list of resources to help them enroll in the coverage program for which they are eligible.” This innovation is worthy of scaling if it proves what I think it will: that it will make the systems of support and services more efficient and more fair.

A Data Bill of Rights would compel federal and state agencies to find proactive uses for their data that would actually help people, starting with creative ways to identify people who might be eligible for benefits. In order to accomplish this, there are challenges that need to be thoughtfully considered:

  • Privacy: We must respect the rights of those who choose to opt-out and not presume everyone will want to be auto-enrolled. We can do this by simply sending eligible individuals and families a link — via email, text, or even snail mail — to a seamless, one-click opt-in to the benefits they may qualify for.
  • Scale: Think big but start small. Any initiative should begin with one or two agencies at the state or federal level, and utilize an agile, human-centered mindset with the intention of scaling up and expanding.
  • Purpose: Agencies must be given a very clear mandate to do no harm, to not take actions that may hurt families, and understand that the objective is to shift the burden from hard-working families who may never know about a program they qualify for onto the shoulders of the government.

Want to know more about how agencies can and do share data safely? Check out our white paper, Maximizing Linkages: A Policymaker's Guide to Data-Sharing.


Steve "Spike" Spiker is a data-inspired collaborator and leader with a focus on tech for good, government transparency, and public policy. In his role as Alluma’s Chief Data Officer, he’s building out a data practice for the entire organization, from data governance to business intelligence. Follow Spike on LinkedIn and Twitter.

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