Although a general consensus has recently emerged regarding the consideration of patients' views (
Kanja Shiten) in medical practices, an agreement is lacking about what constitutes patients' zviews and how they are constructed. The purpose of this paper is to examine the significance of and problems in realizing patients' views through patient participation.
For this purpose, I interviewed twelve members (four patient carers, two supervisors, four doctors, and two coordinators) about the development of Japanese clinical practice guidelines (CPGs) prepared for patients, their families, and carers of patients with pediatric asthma. Using interview data and reports describing this process, this paper explores the meaning of patients' views told by members themselves and the process of constructing such views.
The members argued that the CPGs written by the patient carer best represented patients' views because they were based on actual patient-specific experiences. However, the doctors also claimed to have known many similar experiences. And, the members said that the procedure of CPGs development—which includes selection, seminars, discussions, writing, and proofreading—affect the documentation of patients' views. Although the patient carers participated proactively in this process; doctors provided instructions to the patient carers from a medical viewpoint, and the patient carers internalized the medical knowledge and clinical evidence provided by the doctors. In order to create uniform report, medical knowledge and clinical evidence were preferred, therefore the diversity of patients' experience was reduced.
The results suggest that patient involvement, as a means of gaining patients' views, enables patients to influence the doctor's decisions. However, the doctors continue to control patients during the patient participation process.
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