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Sharing Information about the Pain: Patient-Doctor Collaboration in Therapy and Research
Abstract
The chapter presents findings from recent studies that feature a model of doctor-patient collaboration called Video Intervention/Prevention Assessment (VIA), a research methodology that engages patient-participants in sharing their life stories on video, communicating their concerns and teaching their doctors what it means to live with a chronic illness. Patients are collaborators in creating a comprehensive understanding of illness that expands the medical community’s definition of disease. This chapter focuses on visual narratives made by young patients with Cystic Fibrosis and Spina Bifida as they experience their transitions from pediatric to adult-oriented medicine care. Collaboration in research facilitates more effective ownership of and accountability for their illness, facilitating adherence to treatment plans and improved quality of life. Our chapter concludes with an evaluation of the pros and cons of VIA as a collaborative information methodology.
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