centering people when collecting information

A white lighthouse with a red roof sits against a deep blue sky with streaks of clouds. Like the lighthouse, data collectors sometimes serve as beacons or warnings… eh, I just liked this picture of a lighthouse.

I have a stable job that pays me well. I live in a nice apartment with my husband. We can afford to buy the things we need. My job pays me to provide social services to others, but it’s not likely that I will ever need those services myself. And yet, I am responsible for collecting data from this group of people.

Government and non-profit organizations operate in a racist and classist world. Our culture supports the idea that people in need deserve some punishment for that need. This shows up as needlessly bureaucratic forms, means testing, and othering practices. It also shows up in how we collect information. The questions we ask are often invasive and embarrassing. Many people see it as the price someone must pay to get that service. But we don’t have to do it that way.

People who need help should be able to design for themselves how they want to receive that help. In our world, that almost never happens! So we collect information. Sometimes we collect it because we’re used to collecting it. Sometimes it’s because a funder asks for it.

I ask questions because I want to use the answers to design better programs. I ask myself questions like these:

  1. What information would be useful to share with the person needing help?
  2. What information do I need to do my program well?
  3. What information could I use to plan for the future, or improve the program?
  4. What information do my funders want? What requests of theirs could I push back or negotiate on?

Information I can share
I start with the information that would be valuable to the person receiving services. They might like to know how their A1C levels have changed or improved over time. If they shared their ZIP code, I could make referrals closer to their home. You can also ask people what they would like to learn or know if they take part in data collection.

Information I need now
This category information is different than what a funder might want. The beneficiary of this information should be me and my program staff. I ask, what do I need to keep my program running? I want to know how many people I’m serving. If I know the usual time that people come in for services, I can make sure I have enough staff to support them. I try to work around requests for more invasive data. What would we do with their name and address? If we collect it, ICE could subpoena that information from us. That’s a reality that no one in data collection should ignore. 

Information for the future
This is information I can use to grow or improve my program. Take my earlier example about schedules. If I knew what hours we could be open, I could serve people with busier schedules. This would take me into parts of the community who don’t already come in to see us.

Information for funders
Many funders want to see improvement over time. We scratch our heads for good metrics, then come up with measurements that are hard to collect. I inherited a grant that claimed a weekly class on diabetes could lower patients’ A1C levels in six weeks. This isn’t realistic. It puts needless pressure on the program team and participants. In reality, most funders wouldn’t expect that if we didn’t claim we could do it. We could instead check the program’s impact by measuring patients’ satisfaction. We could test if they’ve learned more about their condition over time. 

I try to do a lot of hard thinking about why to ask a question before I ask it. What will I use the answers for? What answers am I prepared or not prepared to receive? How could I get a more useful answer by asking this in a different way?. How could I learn this without putting it on a survey? What questions could I ask later, when I’m ready to use the information? We questioners hold immense power over people who need our services.