Why We Co-Create Research Systems with Communities

Have you ever gotten a finger squeeze from a pulse oximeter? This device can measure your blood-oxygen without a painful needle jab. Home tests have transformed COVID management, with the CDC encouraging people to use the device to decide if they should seek emergency care.

In theory, pulse oximeters allow anyone to measure their blood oxygen levels. But they also have a basic flaw that undermines this inclusive idea. The sensors are less accurate on darker skin pigmentation—making them less reliable for people of color who are already disproportionately affected by the pandemic. Since hospitals rely on blood oxygen data in decisions, these errors are correlated with higher hospital death rates. In February 2021, the FDA issued a safety communication, warning people about these measurement failures. It gets worse—even the tests for checking sensor bias are built on racialized ideas of skin color that permeate scientific and medical communities.

How can we genuinely broaden who contributes to knowledge when the tools of research often have exclusion and injustice built into them?

At first glance, pulse oximeters look like a tool that dramatically expands people’s ability to measure and manage their health. At the same time, the tool that has saved millions of lives was also built on a foundation of exclusion that could be killing people. From the air pump to the IQ test, the values behind re-usable scientific instruments profoundly influence the values and politics of science. How can we genuinely broaden who contributes to knowledge when the tools of research often have exclusion and injustice built into them?

Creating More Just Research Technologies

At the Citizens and Technology Lab (CAT Lab) we embed power sharing both in our research questions, and also in the tools we develop to conduct scientific research on technology and society. We begin from the understanding that those who create the tools of science exert a powerful influence on what can and can’t be known.

those who create the tools of science exert a powerful influence of what can and can’t be known

Many tools of science are built on assumptions about who gets to create knowledge and who the knowledge is for. As we learn from pulse oximetry, ideas for democratizing knowledge can actually scale injustice when they are widely adopted. It’s important to design research tools together with affected communities rather than treat them as consumers of scientific innovations.

We also know that limitations in the infrastructure of research can make it hard to pursue rigor and collaboration with community. CAT Lab designs software alongside our social science research questions on technology and society. By creating our own software, we can be deliberate about the underlying values of our research, in collaboration with affected communities. When we share our software and processes with other researchers, we contribute to their ability to integrate those methods into their own practice.

Co-creating research software is not a conflict between experts and the public. With the right conditions in place, people can bring profound creativity and urgency to the work of understanding complex systems. If we expect ordinary people to audit and hold digital systems accountable and participate more fully in knowledge generation, it makes sense for them to have input on the tools they’ll use in that work. As scientists and engineers, we can add our expertise to ensure that our research systems generate real value for communities through replicable, validated studies that do not compromise either on democratic values or science.

Why We Co-Create Research Systems with Communities

Creating More Just Research Technologies

Further Reading