Heron

In this project, we are experimenting with new software and hardware systems for personal health data collection and interpretation. We will work in quick, iterative cycles, building on what we learn as we go. We will engage one-on-one with individuals with chronic conditions to uncover the kinds of intimate insights that can only be found at this proximity.

Our iterations will seek answers to some core questions: How can data collection be made more empathetic and less obtrusive? How can more data be collected with less effort required by the individual? What methods increase the quantity and quality of data collected? How can data interpretation be made more flexible, so anyone can arrange data visualizations that surface meaningful answers to the questions that are most important to them?

The most important insights are the ones we will uncover through the course of our work with individuals in this project, although we do have some inclinations to inform our initial experiments. As individuals with chronic conditions already have to think about their conditions more than they’d like, we aim to reduce any added burdens to their day. We have some ways that we can begin experimenting with collecting meaningful data unobtrusively:

“No news is good news” — Some explorations in data collection expect individuals to log health outcomes frequently, otherwise leaving gaps in the data. Individuals with chronic conditions inherently think about their disease and symptoms more when their health is worse; because of this, we can experiment with an approach that presumes a certain baseline (e.g. neutral or positive) when logging doesn’t occur, reducing the burden placed on the individual.

In-context devices — Some explorations in data collection ping individuals requesting input at specific times each day, via text message, email, or push notification. These might arrive while an individual is not well-suited to be bothered with this kind of reflection. Instead, we can experiment with low-cost purpose-built devices that can be placed in appropriate contexts for regular input. For example, a small touchscreen device placed by the sink or in the closet where one prepares for the day could be used to provide the baseline measure of each day’s wellness without obtrusion into life experiences that should otherwise go undisturbed.

Time-aligned data visualizations — Bringing together independent data that’s related by time is a simple but effective way to allow people to find connections they need to answer their key questions. We’ve previously explored this concept, in LN 038: Semantic zoom. This inclination is not well-supported by today’s landscape of apps, which silo their particular domain of data, and further experimentation needs to be done with the interactions used.

Data providers — What data is already generated everyday that can be used to glean important insights without the need for any additional data entry? Some examples: weather forecasts, meetings and travel in calendar events, activities from photos, time spent typing or on the computer, and additional metrics from mobile phones and wearables such as distance walked or hours slept. Further, what unstructured data about an individual’s day can be transformed into structured data?

A focus on self-empowerment — An interface that focuses solely on how bad someone feels won’t be used for long. In order to be a durable tool in someone’s life, it needs to be empowering; it needs to support the outcomes an individual most wants to see, and reinforce their hopes and progress.

No prescribed changes or judgments — What we build will not push individuals to engage in any prescribed behavior changes. In reviewing prior art, we found many examples of health apps and research prototypes that strive to promote specific behavior changes, such as increased exercise or changes to diet. But the landscape for individuals with chronic conditions has many particulars. Every condition is different, and how each body responds to variables is different too. Our project will not make judgments or motivate any prescribed changes. Rather, our project specifically aims to empower individuals with an improved, data-supported understanding of their condition(s); to put the power in the hands of the individual to self-manage and self-advocate for their desired quality of life.

Published March 25, 2024