MyTrac: Bridging the Isolation Gap for Young People with Cancer Through Mobile Connectivity

TL;DR

Young People with Cancer (YPWC) are often the "invisible" patients, caught between pediatric and adult care systems. This paper presents MyTrac, a social networking service that combines the Ning platform with Twitter to provide a lifeline of peer support. The study highlights that while the disease brings them together, it is shared personal identities and mobile-first communication that keep them connected during the darkest stages of their "cancer journey."

The Problem: The "Siloed" Patient

Young adults (18-25) facing cancer encounter a unique form of social exile. Unlike children in vibrant pediatric wards, YPWC are often sequestered in adult hospitals with patients twice their age or isolated in private rooms due to infection risks.

The authors identify three primary barriers:

1. Lack of Critical Mass: Cancer is rare in this age group, meaning patients are distributed thinly across 67+ adult hospitals in Victoria, Australia.
2. Physical Isolation: Prolonged treatments (chemo, surgery) and mobility loss make face-to-face interaction nearly impossible.
3. Psychosocial Stress: Disconnection from school and work occurs at a developmental stage where peer relationships are most critical.

Methodology: MyTrac and the Power of Continuous Presence

To combat this, the researchers developed MyTrac. Unlike generic platforms, it was specifically designed for the Australian context, emphasizing the "individual journey" through its name and branding.

The Hybrid Architecture

• The Desktop Hub (Ning): A space for "static" identity. Participants created profiles, shared photos of their "pre-diagnosis" lives, and shared inspirational quotes.
• The Mobile Pulse (Twitter): This was the system's "killer feature" in 2008. By integrating Twitter with mobile telephony, the researchers allowed participants to post updates even when they were too weak to sit up at a laptop or were in an ambulance.

Figure 1: The MyTrac Identity – Young people forming the letters of the service name.

Experimental Insights: Identity vs. Illness

The study tracked 7 participants over 12 weeks through interviews, questionnaires, and system logs. The results provided a nuanced look at digital empathy:

• The "Optimism Bias": Most participants posted messages that were relentlessly positive ("Life is about learning to dance in the rain"). However, when one participant used Twitter to vent his genuine distress and "hate" for his situation, it created a friction point. The community, struggling with their own burdens, found "negative" posts confronting, illustrating a tension between individual truth and collective morale.
• The Failure of Forums: Interestingly, the pre-designed discussion forums (e.g., "Life Matters") were ignored. Instead, participants preferred individual messages and "channel-hopping" to MSN or Facebook once a trust-bond was formed on MyTrac.
• Shared Histories: Connections were strongest when they moved beyond clinical diagnoses. For example, two participants bonded more over their shared love for landscape gardening than their shared cancer type.

Design Considerations for the Future

The study concludes with a roadmap for designers of medical social networks:

1. Shared Histories: Don't just match by disease; match by hobbies and passions.
2. Flexibility over Structure: Users will build their own sub-communities; don't force them into pre-set forums.
3. Digital Sensitivity: We must plan for the "end of the journey." How does a platform handle the death of a member? The "In-Memoriam" page becomes a functional necessity, not just an afterthought.

Figure 2: Analysis of Interaction Patterns - Comparing mobile micro-blogging frequency with desktop forum engagement.

Conclusion: Takeaway

MyTrac demonstrated that for YPWC, technology is not just an "extra"—it is a vital bridge back to their youth. By blending the pervasive nature of mobile phones with the community-building of social networks, we can reduce the anomie and alienation of the cancer journey. However, designers must remain sensitive to the "emotional fatigue" that occurs within these high-stakes digital communities.

Reference: Davis, H., Vetere, F., et al. (2008). Towards social connection for young people with cancer. OZCHI '08.