In recent years, stakeholder involvement in policy making has attracted attention in the medical and medical fields, but a practical methodology has not been fully established. In particular, in the field of rare diseases, opinions are only conveyed through petitions by individual patient associations, and it is an issue to reflect patient voices in an objective manner in policies in the field of rare diseases. was.

　The research group started the Commons Project with the aim of generating evidence for policy formulation that reflects patients' perspectives and developing methods for collaboration among stakeholders. As a result, a ``place'' called the ``Evidence Creation Commons'' was created in which patients and their families of 10 rare diseases, researchers, and people with administrative experience participate and engage in ongoing deliberation through workshops. Patients and patient families also participated in the research as co-promoters, considered together how to proceed with discussions and summarize the results, and co-wrote the paper as patient authors.

　First, as a result of deliberation in the Commons, we were able to organize and present the difficulties faced by rare disease patients and their families. Furthermore, we discussed the priorities of research themes that should be tackled to address such difficulties. As a result, seven research themes were identified, including ``hindrance to daily life,'' ``financial burden,'' ``anxiety,'' and ``burden of hospital visits.''

　The results of this study are believed to be useful as evidence that can be referenced when formulating policies in the field of rare diseases. It is also said that this method is expected to be applied in the future as a way to involve stakeholders in the policy formulation process.

Paper information:[Research Involvement and Engagement] Enhancing evidence-informed policymaking in medicine and healthcare: stakeholder involvement in the Commons Project for rare diseases in Japan