Working with leaders from the ovarian cancer advocacy community, we developed this series of design principles. Each one is designed to address one or more of the eight core social conflicts experienced by ovarian cancer patients.
• Any new resource for ovarian cancer must include prominent, friendly, open-ended patient stories that many people can identify with. Ovarian cancer must be “seen” sooner by physicians, nurses, patients, and families.
• Any new resource for ovarian cancer must be grounded in the kind of hope that has led to the most successful patient outcomes. Hope is not blithe optimism or a pleasant feeling, but a tangible set of conditions that anyone can perceive and that all patients deserve. Any new resource must treat hope as a “mission critical” condition.
• Any new resource for ovarian cancer must respect that women will come to terms with their disease on their own schedule, not the health care system’s.
• Any new ovarian cancer resource must enshrine “confident consent” as something every patient deserves.
• Any new resource for ovarian cancer patients must respect a broad range of learning and decision-making preferences.
• Any new resource for ovarian cancer patients and their support networks should incorporate as much real, interpersonal interaction as possible.
• Any new resource for ovarian cancer patients must enable them to represent their desires within their families and social groups. These resources must respect all types of families and the many different kinds of relationships women may have in them.
• When appropriate, resources should also be created for spouses, children, etc. that help them become an effective part of the ovarian cancer patient’s support network on their own terms.
• Any new resource for ovarian cancer should use language and concepts developed by patents that reflect their own experience.
• New resources for ovarian cancer patients should acknowledge that communicating about difficult subjects is a skill to be built up over time.
• Any new resource for ovarian cancer patients should present information about recurrence in a way that is appropriate for that patient and her support network.
• Any new resource for ovarian cancer must respect the needs of patients who must prepare for death soon after diagnosis.
• Any new resource must acknowledge and address social conflicts around the end of life, helping patients and their support networks make decisions according to their own values.