We like to think of data as scientific. Hard numbers. Measured calculations. But what happens when our data is about people? Have you considered the human experience in your data?
“Not everything that can be counted counts, and not everything that counts can be counted.”
When we build a model using data on people, we must define real-world feelings, events, and activities and translate them into concepts we can measure with numbers. There isn’t really any way around this.
But when mapping from the real world to the abstract, it’s vital that we consider the human lived experience in data. We must consider the perspective of the people our numbers represent. After all, we’re just moving numbers around, but they are living their lives and experiencing actual events. Ensuring that we understand — and account for — this will make our research more accurate, more ethical, and more effective.
Measuring From the Outside In
The data we collect doesn’t always immediately reflect the experience of the people it represents. It’s important to consider context. A brilliant example of this comes from Palestine, where health researchers are questioning the application of the Western notion of post-traumatic stress disorder.
Data on mental health in Palestine paints a bleak picture. Studies on adolescent suicide attempts, PTSD, and depression all show much higher rates in the territory than in, for example, the United States. But a lot of this data comes from organizations not based in Palestine. And this is an issue in accurately measuring human experiences. Dr. Samah Jabr, chair of the mental health unit at the Palestinian Ministry of Health, does not think that external definitions of mental health concepts are always a good fit.
Dr. Jabr argues that the methodologies developed and tested in another country may not be the best methods to be used to study human experiences in Pakistan. The Beck Inventory, commonly used to determine if an individual is suffering from depression, offers no option to distinguish between a normal response to a bad situation and depression. She This is not specific to the Palestine situation at all. What could be considered to be an appropriate response varies a great deal depending on the lived experiences of the individuals involved.
“There is no ‘post’ because the trauma is repetitive and ongoing and continuous. I think we need to be authentic about our experiences and not to try to impose on ourselves experiences that are not ours.”
~ Dr. Samah Jabr
It’s The Answer isn’t “Yes” or “No”
Do you want to have a baby? Yes or no?
Historically, the general consensus was that pregnancies are either wanted or unwanted. But researchers are starting to realize that applying a binary filter to such a complicated question isn’t really reasonable. In the case of pregnancy, as with many human decisions and experiences, there isn’t always a clear one-word answer to these questions. Especially when considering something as life-changing as pregnancy and parenthood. Forcing nuanced human experience data into a binary-only option is losing a lot of information about our world.
“In the past, we thought of it as binary, you want to be pregnant or not, so you need contraception or a prenatal vitamin. But it’s more of a continuum.”
~ Dr. Maria Isabel Rodriguez, Oregon Health and Science University
The US Centers for Disease Control and Prevention recently changed the way they asked women about their feelings on pregnancy. Instead of forcing women to choose between calling a pregnancy “wanted” or “unwanted”, researchers gave them the option to say they were unsure. And that made a big difference in the data.
The Guttmacher Institute found that, in 9% to 19% of cases, women said they weren’t sure whether or not they wanted to have a baby. Other research indicates that anywhere from one-fifth to one-third of women are unsure about having children (or more children). Considering the human experience in this data, a change in approach to reproductive health care seems to be in order.
It’s Not Always Black and White
By 2050, experts predict that more than half of Americans will belong to a “minority group”. One in five Americans is expected to identify as multiracial. But what does that mean? Most data gathered on race in the US (including the national Census) allows people to self-identify by race. It may seem like a straightforward question. But that isn’t always the case.
“Consider, for example, a man whose mother is Asian and whose father is white. This may seem like someone who could easily be categorized as multiracial. But if this man was raised with little or no interaction with his white relatives or had experiences that were more closely aligned with those of the Asian community, he may well select “Asian” and nothing else when describing his race.”
~Eileen Patten, “Who is MultiRacial? Depends on How You Ask”
People’s real-world experiences will help define how they identify racially. And some people may only consider the race of their parents, while others might look further up the family tree. Some may not even be aware of their full racial background.
When an external researcher tries to lump people into broad categories without considering the human experience in their data, it leads to ineffective (and incorrect) results.
Do you need help integrating the human experience in your data? Do you want to make sure your data best reflects the people it represents? At Datassist, we specialize in helping journalists, nonprofits, and government agencies better understand human data. We can help you. Get in touch today.