Tackling Dilemmas in Supporting 'The Whole Person' in Online Patient Communities

摘要

Online health communities that engage the patient as a whole person attend to personal and medical needs in a holistic manner. Whether current communities structure interaction between health professionals and patients to address the whole person is an open question. To gain insights into this question, we examined a sample of online patient communities to understand health professionals' involvement in bringing in medical advice into peer-patient conversations. We found the communities fall short in supporting the whole person, because (1) patient expertise and clinical expertise generated by health professionals are shared separately, and (2) patients' quantified data are separate from narrative experiences. Such separation in the design of these systems can lead to limitations in addressing patients' interwoven medical and personal concerns. We discuss dilemmas and design implications for supporting the whole person in online patient communities.