Promoting inclusive, patient-oriented research: A rare disease patient perspective

Patients and members of the public contribute valuable information and perspectives to research projects because they have experienced a disease themselves or are close to someone affected by an illness. Patients with rare diseases are incredibly motivated to participate in research projects. Any advancement of scientific or medical knowledge or favourable political decisions can increase the possibility of a cure – or at least a treatment – that can stop or slow the progression of their disease and improve their quality of life. Patients’ lived experience may help researchers fill gaps in understanding conditions that they know mainly from theory. In this article, the authors address the need for more focus on patient-oriented clinical and public health research, the importance of bringing patients’ perspectives into research, issues around patient involvement, and areas for future research on the topic.