JMIR Publications

ABSTRACT

Physician-patient collaboration was recognized as a critical core of participatory medicine more than a century ago. However, the subsequent century focused on scientific research as enabling cures and physicians as dominant players in health care, with patients subordinated to a passive role. This paternalistic model weakened in the past 50 years, as women, minorities and the disabled achieved greater rights and chronic “western” diseases became more prevalent, promoting a more equitable role for physicians and patients. By 2000, a ‘shared decision-making model’ became ‘the pinnacle’ for clinical decisions, despite a dearth of data supporting its impact on health outcomes, or its reliance on studies including a single patient and a solo practitioner, or evidence suggesting that no single model might could fit diverse clinical situations. We report a young woman with intractable epilepsy due to a congenital brain malformation whose family and her medical specialists used a collaborative decision-making approach. This model positioned the health professionals as supporters of the proactive family, and enabled them all to explore and co-create knowledge beyond the clinical realm. Together, they involved other members of the community in the decisions, while harnessing diverse relationships to allow all family members to achieve positive levels of health, despite the resistance of the seizures to medical treatment, and the incurable nature of the underlying disease.