2022 年 39 巻 3 号 p. 151-155
Recently, it has become essential for scientists themselves to understand “the expectations that society has for science” and to make efforts to promote such understanding.
In other words, scientists should not conduct research alone but should cooperate and collaborate in various ways with “non-scientists,” including the general public. The discussion of patient participation in a study is also in line with this trend.
Discussions on patient involvement in research are also in line with this trend.
The “participation and contribution of patient groups (or individual patients and their families) to academic research in a broad sense, in some form of “cooperation or collaboration,” has the potential to discover new values in research through the input of the experiences of patients and their families. For this reason, many people involved are looking forward to this.
However, there are still only a few cases of collaboration with patients from the start to the research goal.
In particular, the number of patients per disease is minimal in rare and intractable diseases, which is the subject of this presentation. Therefore, issues unique to this field include a lack of previous research on the condition and difficulty securing the necessary number of subjects.
It has been pointed out that this is why patients, and their families are sometimes more “experts” on their symptoms, progress, and care than are medical professionals and researchers.
The authors are conducting a patient–driven research study. Specifically, the patient side determines the direction of the research, and the researcher side is responsible for providing the methodology and analysis of the study.
In this presentation, the authors introduce a case of collaboration between the authors and an association of patients with rare neurological diseases as an example of patient research participation.
