Heron

Anyone navigating life with a chronic condition knows their triggers, interventions, and symptoms fairly well. But they often don’t know exactly how their condition responds to specific variables — and that’s a problem.

The interfaces for personal health data — for both collection and interpretation — leave a lot to be desired. Yet this data is critical for those with chronic conditions to see how their personal health is responding to the variables in and outside of their control.

Without good visibility, it’s hard to improve health outcomes.

That’s what this research project is about: improving visibility into personal health data for those with chronic conditions in support of their efforts in self-management and self-advocacy. We want to see a world where individuals with chronic conditions can understand the important correlations within their personal health, make improvements in faster iterations, and advocate for improved support from healthcare and insurance providers.

So — who are we, and why are we doing this? Sarah is a researcher in bioethics, and Alexander is a researcher in human-computer interaction. This research project is a collaboration that sits at the intersection of our fields of study, but it’s also more personal than that. Sarah was diagnosed at the age of sixteen with Rheumatoid Arthritis (RA). Living with RA gives Sarah intimate insights into the problems this project aims to address, and into the outcomes of our experiments with possible solutions.

Our project will primarily consist of many iterations designing, building, and reviewing potential concepts for a personal health system.

We will publish research updates here as we go. Our first few posts will share some background on how we’re thinking about the problem and some hunches and experiments we’ll try out first. Then we’ll move into regular cycles iterating on the various experiments, and we’ll share what we find along the way.

We’ve found working in the open to help route key resources and intersecting work to our inboxes, and help spark guiding conversations. We will continue that tradition with this project to benefit from the knowledge of the commons as we go, and contribute to it, rather than working in silence and only publishing at the end. So — please don’t hesitate to reach out as you read along.

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Published March 19, 2024