The Challenge

Most health tracking tools are designed for individuals. But chronic care, especially in Thai families where intergenerational caregiving is woven into everyday life, happens relationally. Family members observe, interpret, and respond to each other's health long before any diagnosis requires it.

This raises a design question HCI has largely left unanswered: how do families actually share health data together, and how should technology support that, without turning care into surveillance?

Approach

Grounded in data humanism, which understands data as situated, relational, and embedded in lived experience, I conducted a participatory design study with four Thai parent–adult child pairs (n=8), each managing metabolic conditions (hypertension, high cholesterol, high blood sugar).

The study ran two co-design cycles using contextmapping methods.

• Cycle I explored how families currently track and share health data.

• Cycle II explored how those practices might shift across changing health phases, from stable routines to health crises and back.

Findings were developed with participants, not extracted from them.

What I Did

• Designed and Facilitated co-creation sessions with Thai family pairs

• Developed data sensitizing toolkits for personal health data reflection

• Developed the Wave Framework, a health data sharing model of four health phases that families navigate together, defined by their own circumstances

• Designed 11 principles organized around three pillars: designing with relationships, adapting to changing situations, and honoring lived experiences

• Built an interactive storytelling website communicating research insights for design practitioners

Key Findings

This research develops four interconnected contributions that extend existing HCI framings of health data and privacy:

• Dynamic Participation Patterns Families fluidly shift between active and passive tracking, and between open and selective sharing, based on health situation and relational comfort, not fixed patient/caregiver roles. Systems that assume stable roles misfit how care actually works.

• The Wave Framework A cyclical, family-defined model of health data sharing across four phases: Stable Sea (routine, light sharing), Windy Wave (emerging concern, collaborative observation), Stormy Sea (crisis, intensive coordination), Calm Water (recovery, reflection, building shared memory). Phases are defined by families from their own circumstances, alongside clinically prescribed. This extends linear post-diagnosis stage models toward a lifelong, cyclical view of care.

• Emotionally-Safe-by-Design Selective disclosure is not a privacy failure, it is care work. Families manage when, how much, and in what tone they share to protect each other from burden or anxiety. This extends privacy-by-design (access control: who sees what) to emotionally-safe-by-design (relational impact: how disclosure affects the relationship), a shift from technical permissions to affective calibration.

• Interpersonal Data Intimacy Prior HCI work on data intimacy focuses on an individual's bond with their own data. This study reframes it as a practice between people: health data circulates within families as relational material, sustaining care, connection, and shared meaning across changing health situations.

Outcomes & Impact

This research reframes the design challenge from access control toward relational maintenance, supporting the ongoing work of care in families navigating chronic conditions across lifetimes. The Wave Framework gives health technology designers a vocabulary for when to design, not just what to build. Each phase carries different relational dynamics, the framework makes those visible so design decisions can respond to them.

Recognition:

• Featured at 4TU Design United e-magazine for Dutch Design Week 2025

• Presented at ICT.OPEN 2026, Human-Computer Interaction and Societal Impact in the Netherlands

Validation: Sessions with international design students (n=5) suggest these insights extend beyond Thai contexts to other close relationships managing chronic illness across cultures.

Future Applications: The framework supports designing family conversation facilitation tools, emotionally safer health sharing approaches, and prevention-focused design that encourages connection before crisis points force difficult conversations.

Keywords

Participatory Design Research · Family Informatics · Data Humanism · Chronic Care · Digital Health · Collaborative & Social Computing

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