JMIR Publications

ABSTRACT In this paper, we examine the types of knowledge that are found in participatory decision-making in medicine. Sometimes, the engagement in participation medicine involves only two types of knowledge: “patient knowledge” (in the forms of self-knowledge, experiential knowledge, and understanding and use of scientific knowledge) and “physician knowledge” (in the forms of scientific knowledge, clinical training, and clinical experience). Sometimes, the engagement in participation medicine involves others in addition to the patient and physician. These others include significant others in the patient’s life, and general and subspecialty physicians caring for the patient as consultants. Other times, there is involvement of experts in the cognitive sciences, decision scientists, psychologists, sociologists, and those who are involved in developing decision tools potentially useful to the patient in more collaborative decision frameworks. This paper is divided into two parts, and each part is divided into two sections. Each part begins with an examination of patient and physician knowledge in the patient-physician relationship and then analyzes the potential contributions of the patient, physician, and other experts in expanded frameworks involving patient knowledge production in the setting of organizations and societies, nationally and internationally. Regarding patient knowledge, first we analyze patient “self-knowledge” and “experiential knowledge” that is shared with physicians and others in the patient-physician decision-making regarding the patient’s health and medical care. Second, we examine how knowledge gained through a patient’s own manifested and anticipated experiences in development of new knowledge platforms leads to more patients sharing what they gained from reflecting on their self-knowledge and experiential knowledge as shared in “communities of participation” and participating in organizations and societies involved in “patient knowledge production.” Regarding physician knowledge, first we examine scientific knowledge initially provided by the physician to the patient in the patient’s health and medical care decision-making. Second, we examine the inclusion of others and the use of decision tools in the more complex area of “collaborative decision-making.”