Most health apps treat data sharing as just another feature, offering binary choices: everything or nothing. But family relationships exist in the blurry space between extremes. People care for each other, yet their data lives in separate worlds.
There's a gap between how families naturally care for each other's health and what technology supports. Families want to share without becoming burdens, stay aware without constant monitoring, and adapt their involvement as health situations change over time.
This project is set to explore data intimacy within close relationships, why and why not people share health data with family, and how we might design for relational use of health data that supports natural family care dynamics.
This research focused on everyday health information that families naturally discuss: behavioral data (steps, sleep, eating habits), vitals (blood pressure, cholesterol), and medical updates (check-ups, lab results).
We looked specifically at metabolic conditions, high blood pressure, cholesterol, and blood sugar, because they require ongoing lifestyle management rather than intensive medical treatment, making them suitable for family support and shared decision-making.
We used participatory design and context mapping methods, working with families as co-creators rather than study subjects. Families are the experts in their own health management and relationship dynamics.
Context mapping helped families reflect on their current data sharing experiences through sensitizing workbooks and paired discussions, revealing the personal stories and meaning behind their health data.
Participatory design positioned families as co-designers, actively shaping future health-sharing scenarios through conversation cards and collaborative design activities.
We chose this approach and method because family health sharing is about intimate relationships. Pair participation let us observe how families naturally negotiate, compromise, and adapt to each other's health needs with their relationship and shared experiences and history.
This reseatch revealed three key perspectives about family health data sharing, which became eleven design principles for human-centered health technology.
While grounded in family health, these principles apply to any intimate data sharing within relationships. We invite designers to explore how relational approaches might transform other domains where people navigate sensitive information together and use data as material for conversation, mutual understanding, connection, or care.
Every data point tells a human story.
We approached health data as intimate material that reveals the lived experiences behind the numbers we collect, whether from sensors or self-logging.
Drawing from data humanism philosophy, we challenged the idea of data as neutral or universal. Instead, health data becomes meaningful through relationships, emotions, and the contexts families create together over time.
This research is part of Pitshaya Chonato's Master's thesis, conducted under the supervision of Dr.ir. J. Bourgeois (Chair) and Dr.ir. M.H. Sonneveld (Mentor) under the Data Centric Design Lab, Design for Interaction, Industrial Design Engineering, TU Delft.
For the complete methodology, detailed findings, and analysis, download the full thesis document. We welcome researchers, designers, and practitioners to build upon this work and contribute to the growing field of relational health data design.
