Who Pays the Cancer Tax? Patients’ Narratives in a Movement to Reduce Their Invisible Work

Many studies examine the division of labor inside organizations. Yet there is also an expected division of labor between organizations and their clients, which research to date has tended to ignore or has treated as static and easily accepted by both parties. How might clients change the expected division of labor with a service organization? We developed this question while studying an academic cancer center (ACC), where patient activists led a movement to bring to light the burdensome invisible work they and their families did to coordinate their treatment. They shared their own stories, developed formal channels for collecting more stories, and worked to broadcast the growing set of stories across ACC. Their stories became a resource for change and mobilized a coalition of staff allies. Coalition members drew on the patient stories to develop a new diagnostic framing of the “Cancer Tax”—the burdensome coordination work ACC required of patients. They also developed a prognostic frame for how ACC could help, which inspired a new program that took on some of the patients’ coordination tasks. In this way, the patients’ stories created new awareness of the problem and provided resources for staff allies to make the case for taking on some of the patients’ invisible work. This study shows that clients can effectively influence organizational change through movements fueled by personal narratives (for instance, lessening the coordination work they must do to coproduce complex services).