Vaccine Questions and How Data Empowerment Happens
Recently, while lining up in a vaccination center where I live, I overheard a woman ask a healthcare frontliner what type of vaccine was on offer that day. The worker replied, “We don’t know until it comes, and it does not matter. You need to be vaccinated anyway, especially with your age and your co-morbidities.”
That exchange struck me in several ways.
First, it highlights the inherent power imbalances in our everyday interactions, at both individual and institutional levels. In this case, the healthcare worker’s position and medical knowledge put him in a position of power over the 50-year-old woman.
Second, it shows how power imbalance can be sustained by how people act towards each other. Here, the healthcare worker reinforces the power inequality by dismissing the woman’s questions and pointing out her lack of choice.
Third, it shows the potential of a question to alter that power imbalance, if the question is answered.
We have written elsewhere that transformative data projects need to start with a clear problem that we want to solve. We’ve also talked about the importance of having rights to data as a precondition for data empowerment, and that asserting one’s data rights is an important step in the process of demanding transparency and accountability — two critical outcomes of data empowerment.
In this blogpost, we write about how, like the woman at the vaccine center, asserting our right to data can help strengthen collective actions to demand transparency and accountability.
A Question that Matters
“What type of vaccine is available today?”.
This is a simple, but important, question to the woman who asked it. The woman explains to the health care worker that the answer matters to her because she has read about the variation in vaccine efficacy rates, their different side effects, and that some vaccines are recognised by some countries but not others. If she is informed about what vaccine is available that day, she can decide whether to get vaccinated or go home and wait for her preferred brand to be available.
The answer to her question will help her make an important decision that will affect her health.
People ask questions they consider important, and that help them make decisions. For instance, Ken Abante, who leads the Philippines’ budget tracker, tracks the government’s Covid-19 response spending to understand if enough money is being spent in the right places to tackle both the virus and the hardship and hunger that has spiked as a result of continuous strict lockdowns.
A clearly defined question is an important starting point in claims-making for people’s right to data and an important step on the path to data empowerment. A clear question helps define the types of data needed, the routes to access this data, and the skills and resources needed to use it.
Starting with the questions people have — the data they demand — makes it far more likely that published data will be used. Hence, we agree with Sanjay Purohit’s argument that “the people who we are trying to serve are at the center” of everything we do with data, and focusing on people’s questions — their data needs — is the primary building block in this process.
An Environment that Allows Asking Questions
The woman waiting in line was able to ask questions because the environment allowed her to do so.
That is not always the case across the world. A report published by Scholars at Risk, an organization that aims to “protect scholars and the freedom to think, question, and share ideas”, recounts several cases where governments use coercive measures to prosecute scholars who ask dangerous questions and expose uncomfortable answers.
An environment where people are able to ask questions is fundamental to data empowerment.
The government of Uganda, for example, in partnership with civil society organizations, launched the AskYourGov online portal where citizens can ask the government questions that matter to them. While moderately successful, it cultivated a climate of accountability within government and strengthened people’s rights to information.
This is why several advocates have been painstakingly, in the last few decades, advocating for people’s right to information (RTI). RTI laws help create an enabling environment for people to ask questions and demand answers.
Open data advocates do the same by pushing for proactive publication of data so that when people have questions, they do not have to go through a bureaucratic process to obtain data to satisfy their needs. Without a legal, political, and social environment that allows people to ask questions and get answers, data empowerment will not happen.
A Capable Seeker
In our story, the woman ultimately got the information she needed to make her decision (she was vaccinated). She was able to take control of her choices because she is highly-educated, has a good understanding of the topic at hand, and knew what questions to ask to make a decision important to her. Not everyone is in this position.
The capability of data seekers is a critical dimension in data empowerment. People’s capability to access, understand and analyze data is important for them to use data in their lives. We agree with Bhargava and others who say data literacy goes beyond skills — it includes strengthening “the desire and ability to constructively engage in society through and about data”.
A report on the state of open data across the world found that the publication of open data outpaced data use and the fundamental cause is the low level of data literacy. Much is still to be done to build data literacy, for both individuals and organizations.
In this post we’ve explored two ingredients that are foundational for data empowerment: 1) an environment that allows questions to be asked and 2) the capability of people to ask questions. In the next post, we will describe how promoting data empowerment will help people decide how their data is used and make decisions about privacy and protection.