Challenge

How might we provide survey results from a clinical research study to parents in a way that is compelling, ethical, and actionable?

Outcome

A data-driven visual narrative template that aids comprehension and engagement, is flexible and accommodating for the spectrum of experiences, and uses appropriate, clear language that considers the circumstances of receiving health findings digitally.

Research

Pre-work

Questions I had when working with SPARK's psychologists and research team:

• What general narrative could we tell with the information collected from the surveys?
• How could we frame the data in a way that makes sense to parents, but maintains scientific integrity?
• How could we create a repeatable story format for future surveys or questionnaires, to make the data delivery process more sustainable from a development perspective?
• Finally, how could we make sure that the information from this story was useful, actionable and interesting to parents?
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User testing

We first shared the standard paper reports with 8 families participating in SPARK, to get a baseline understanding of how they might interpret the data and feel about receiving the report. Having worked with this population for several years, my team had a good sense of challenges, needs and emotions in their daily lives.

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Findings

One very simple example of this would be using the word “average” versus “adequate”. In different versions of survey results, these two words were used to mean the same thing. So from a clinical perspective, I could have used either. When I presented these options to parents, however, there was a very strong reaction. To quote one mother, “Adequate feels insulting. It feels like “you’re not good enough”.

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Many of the SPARK surveys deal with psychometric data. It’s personal, and the feelings that language evokes makes a big difference in terms of user experience. In one survey, a standard report feature was “Strengths and Weaknesses”. But when providing the same information to parents, it was more favorably received when framed as a “Focus Area”. There were also common clinical phrases that we just dropped altogether, like “Adaptive Level”, because they just weren’t useful to helping parents understand the information.

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Additional learnings:

• 47% said the report was “somewhat easy to understand”.
• 53% said that the report was “somewhat useful”.
• Parents expressed desire for a report more focused on their own child.
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Iteration

I started with some sketches, and tried to consider how to apply a consistent pattern across each report, despite being comprised of different data.

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The narrative I drafted took the shape of a funnel, starting broad with the purpose of the survey and community results, and then narrowing in on specific insights about the participant.

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Through additional testing, I learned that parents responded more positively to simple bar charts and line graphs. I had initially sketched an animation-heavy scrolling visualization that cast their child as a star among dots that would join and disperse based on survey results. Although the underlying information was the same, the impact was lost. I was I was met with a lot of confusion and frustration. People didn’t know what they were looking at. They didn’t have that mental model already stored in their brains, and they didn’t have time or want to spend the time trying to decode it.

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“Bar charts make sense to me, I learned them in school.”

Based on our research, we landed on a set of visualizations that were less flashy and experimental, and more immediately recognizable to parents. Especially because parents already felt like they had little to no time, it was inappropriate to make them do the extra mental work.

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“I don’t need to be reminded what my child can’t do.”

A blind spot for me which came out during user testing was the difference between parents of young children and older children or teens receiving the report. What we learned during testing was that for parents of young or newly diagnosed children, this part of the report was their favorite, super helpful. Although it was difficult to see that their child’s skills were mostly in the “Low” end, it was useful and actionable to have a few focus areas to think about, maybe to discuss later with a therapist. However, when we showed this to parents and caregivers of older children, especially preteens and teenagers more severely impacted by autism, their responses were much less enthusiastic.

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We heard comments like “I already know this.” Or “I don’t need to be reminded what my child can’t do.” The emotional impact of the information outweighed any potential usefulness of the focus areas. And, for example, telling a parent of a fourteen-year old son, who has been nonverbal their whole life and maybe needs assistance using the bathroom or can’t hold a pencil, telling them they need to “Focus” on those skills is really hard.

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Designing for multiple user behaviors

During user testing, some parents strongly expressed that they would only read the text, or only look at visuals. Initially, there were some areas where I had thought I’d let the charts do the talking. This problem maybe should have been obvious to us from the beginning, but we needed to ensure that parents were getting the same information in the written story as the visual story. So here, if someone is only getting the information through text, we need to make sure they are receiving the same information as show in the chart, shown here:

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Lessons Learned

One of the challenges of this project was balancing scientific practice and regulations with what is best for the user. Throughout the process I worked closely with subject matter experts at SPARK to adapt content that is traditionally intended for clinicians, for a broader and more inclusive population.

In 2019, I gave a talk at UXPA Boston on this project. Check it out here.