Building a Better World: Choosing Lived Experiences Over Fiction

Reality can be as strange and scary as fiction. But the truth is that we as communities don’t have to live in constant fear of our data being used against us by sinister and powerful “Big Brother-like” governmental forces. A paper co-authored by our DASH colleagues argues that public health, healthcare, and social service sectors simply need to work with communities to democratize decisions about how their data is used.

Big Brother’s Big Data

“Data” often plays a key role in our favorite science fiction stories. It usually goes something like this:

A machine with limitless capacity collects and processes all conceivable information about people and their environments. In the process, the person controlling that machine gains powers of god-like omniscience.

In darker versions, this leads to an authoritarian social order maintained through predictive policing and other oppressive surveillance measures. Big Data becomes Big Brother’s tool for maintaining order, and the hero’s mission is to free the people by breaking the villain’s hold over us.

One great example is FX’s technology-based conspiracy TV mini-series Devs, where Forest, who is the CEO of a technology company, is obsessed with manipulating quantum code. Forest is on a mission to prove that, with enough data, you can precisely predict the future. He wants to show that every future event is already encoded in the past and the present.

We hear him say ominous, intense, and eccentric stuff like, “The marble rolls because it was pushed. The man eats because he’s hungry. An effect is always the result of a prior cause. The life we lead with all its apparent chaos is actually a life on tram lines: prescribed, un-deviated, deterministic.”

In this type of sci-fi, having and using “the data” ends up confirming that humans cannot exercise any free will. After all, the data says that everything that happens was meant to happen anyway. And if everything is pre-determined, then human beings cannot be responsible for their own actions, adding yet another dark layer to our dystopian fiction. In Forest’s words, “You can only have done what you did.”

Minority Report in Reality

There’s something telling in all this. After all, these dystopian works of fiction reflect the truths and well-founded fears that we all experience in our lives.

For starters, sure - data is powerful. Even if we can’t predict the future with precision, data can at least shed light on some of the main causes of our actions and circumstances, and that can have political consequences. Data, for instance, showed us that only a handful of companies are responsible for emitting the vast majority of planet-warming greenhouse gases, rebutting the fossil fuel industry’s propaganda narrative that our individual lifestyle choices are to blame for climate change.

By the same token, yes, data can sometimes be dangerous too. Think of the Cambridge Analytica scandal and its implications for how data can undermine democracy. Or think of the LAPD’s Minority Report-like data-driven policing initiatives that reinforced existing biases and fueled the over-policing of BIPOC communities.

Building a Health Utopia

All this begs the question: how can we use data to make the world a better place while steering clear of scary dystopian paths? After all, as we are still learning during the COVID-19 pandemic, when it comes to public health, data has the potential to not only improve lives – but even save them. And it would be foolish not to avail ourselves of such a powerful tool.

One answer to this question comes from a paper published in the Journal of Public Health Management and Practice in the summer of 2022.

Co-authored by members of the Data Across Sectors for Health (DASH) initiative, the article reflects on the potential of data. It explains that “as the sources of ill health do not arise from a single sector, yet are reinforced by social and structural determinants in multiple sectors, the data that illuminate these determinants and support progress in addressing them also derive from multiple sectors.”

Pointing to various studies, the authors explain that while multi-sector data has vast potential to improve health outcomes in our communities, data and technology have often been used to reinforce racist systems. The authors then point out that these harms can be best addressed “when community and people represented in the data have an opportunity to participate in decision making throughout the data lifecycle.” 

In other words, including people with lived experience of inequity in projects that use health-related data from across different sectors is the most effective way to democratize data projects, which then serves as an antidote to the potential harms of data.

However, looking at a national survey, the authors find that “People with lived experience are generally not actively engaged or are not active decision-makers in shared multisector data initiatives.”

Put simply, there is a gap between what we know and what we do: “Recently released framework and toolkits for community health measurement and shared data call for cocreation by community members and/or people with lived experience. However, according to data presented here, this has not (yet) translated into widespread practice.”

So how do we close that gap? One policy recommendation the authors make is for practitioners and policymakers to place equity front and center in data-sharing efforts, and we can already see signs of that happening across the nation.

Washington State, for example, recently published its Community Compensation Guidelines after the State signed SB 5793 into law. This law codified the need to financially compensate people with lived experiences for their participation in public policy discussions – be it data-related or otherwise. The law and the underlying philosophy ultimately “embrace the reality that people are the experts of their own lives and should be partners in government decisions that impact them.”

So, if there is a way to avoid recreating the dystopias of Hollywood, then creating a more democratic and equitable way to collect and process data is certainly the way forward. And there’s no reason we should give into the deterministic pessimism of science fiction. We can, in fact, determine our future. We just have to make sure everyone is involved.