Don't think you're powerless. It's people who change policy.
Digest #48
This month is a time of reflection around the world with overlapping observances of Passover, Ramadan, and Easter. Here, at the Data Values Digest, we’re taking this opportunity to reflect on the stories that have emerged from the past two years of the Data Values Project and campaign.
Hundreds of people from around the world shared their views during the project’s public consultation in 2021-22, including activists, practitioners, policymakers, and others. Consistently, people reported the need to shift power in how data is produced, managed, and used to create fairer systems that protect people from harm and benefit everyone.
Last week, the campaign published the sixth and final Voices of #DataValues—profiles of people around the world who contributed to the Data Values Project and whose stories underlie the Data Values Manifesto. These are first-hand accounts of how data and technology are impacting people’s lives—and of the innovative and creative ways they’re responding to create fairer and more inclusive data systems.
What follows is a preview of the stories in the Voices series, from Gwen, Lucy, and Rob:
“Don't think you're powerless. It's people who change policy.”
Gwen Phillips - Ktunaxa Nation - Indigenous Data Governance Advocate
Gwen Phillips has fought for years to see the Ktunaxa people’s views represented in the data that the Canadian Government collects about them. Gwen’s story centers around people taking control over their own data future, reflecting the Manifesto’s call to support people to shape how they are represented in data.
“For my own nation, we had enough of others saying who we were and what condition we were in, taking ownership of our futures by determining how much disease and dysfunction we had. It was about us taking back control of our identity, taking back control of the ability to tell people about ourselves and more critically to have our people understand themselves as individuals.”
“As funders, we’re accountable for the change we make in the world.”
Lucy McDowell - Senior Manager for Public Participation - Wellcome Trust
UK-based foundation Wellcome has made a concerted effort to place people’s lived experiences at the center of health research. Lucy McDowell explains in her story that centering equity and community engagement lead to better outcomes in health-focused projects.
Donors have an essential role in ensuring that principles of equity and inclusion permeate data-focused funding, Lucy says. The Manifesto calls on donors to fund open and responsive data systems so that all people share in the benefits of data.
“Ultimately we are accountable for the change that we make in the world. So we have to have knowledge and understanding what's happening on the ground and build relationships with communities in order to enable better research, better outcomes and equitable ways of working,” she says.
“Data has endless potential, but simply making it available isn’t enough.”
Rob Robinson - New York City fair housing advocate
Through personal experience of homelessness and as a fair housing advocate, Rob Robinson has seen the power that data has to convince policymakers to take action. But making data usable requires building trust among data partners. In his story, Rob explains that he is using the Data Values Manifesto to bring community advocates and data scientists to the table to collaborate on data projects.
“Knowing that other people are using this Manifesto to move their work along invites us to ask: Do we want to be a part of a bigger movement? Or do we want to sit alone and struggle and say: ‘Why don't they listen to us? Why don’t they agree with us?’,” Rob says. “If the rest of the world can use that Manifesto, so can we. It speaks to everything that we want to accomplish in the ways that we want to accomplish it. So it's—it's just a fascinating tool, and every time I look I keep reading it over and over, and I'm like this is it. It's in a neat package. I got it now.”
The excerpts above are from three of the eight individuals who contributed to the Data Values Voices series. Explore the complete series here.
The Data Values Digest will be back in two weeks. In the meantime, we wish you and yours a restful and restorative time this spring as we witness seasons changing and prepare for the work ahead.