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Principal Investigator

Objective

In many countries, incorporating views and opinions of patients has become an essential part of policy making in medical research and clinical medicine. However, such practice is not yet so common in Japan. In this project, a virtual sphere for sharing opinions and carrying out discussions among various stakeholders such as patients, medical researchers, and policy makers will be established using ICT. It is called “evidence-generating commons.” The challenges and proposals generated from the “commons” will be interrogated by the stakeholders and presented as evidence for policy making. The project will also aim to find out effective methods to facilitate collaboration among stakeholder so that the evidence generated by the “commons” are suitable for the application to the actual medical policy.

Outline

In contract to some of the countries where incorporating views and opinions of patients is considered as an important part of policy making, such practice is not so common in Japan. Patients and patient groups tend to request their needs and not collaborate with medical researchers and policy makers. The funding policy for medical research is mostly decided by specialists such as medical researchers and policy makers.
In this project, ongoing medical research on rare and intractable disease, RUDY JAPAN, will become a basis of “evidence-generating commons.” By utilizing existing networks, patients and researchers will carry out discussions on the needs and challenges necessary to design medical research policy. Many of the discussion meeting will be conducted using ICT so that participants can join even if they live or work in distant places.
In the second stage, policy makers will join the “commons” and the contents produced through the discussions and debates will be analyzed from the point of views of applicability to the actual government policy.
Through the project, there will be new opportunities for various stakeholders to participate actively in policy making processes. The project will also provide policy makers who work on the design of funding strategies of medical research in the government sectors with valuable and useful evidence for their work.