Intrinsic Motivation to Share Health Information: Design Guidelines and Features for Patient Sharing Platforms

Abstract

Health-related social media platforms, such as PatientsLikeMe, have enabled patients to share information with other patients with similar conditions and more advanced in their health care continuum (i.e., survivors). These platforms have demonstrated the value of patient to patient communication; such as learning more about new treatment options, outcomes, and quality of life. Yet, evidence suggests that most health applications have low usage rates by physicians and patients. Data sharing platforms where patients share their medical information will not succeed unless security and confidentiality are assured, and enough patients are motivated to participate. Drawing on the theories of motivation, we developed design guidelines and features for a platform that encourages long-term participation. The proposed design guidelines and features are anticipated to increase users’ intrinsic motivation through feelings of competence and autonomy; which in turn will increase information sharing. In collaboration with an oncologist and a non-profit cancer survivor organization, we design an experimental study to test our design guidelines and features.