8. Items Relating to Patient and Public Involvement (PPI)
In the implementation of the present Action Plan, efforts must be made not only to
publicize and explain the plan to the target patients, but also to continuously
disseminate information to the general public and society at large and to establish
a mechanism for patient and public involvement to ensure transparency and to
include the viewpoints of patients and citizens.
Specifically, a Patient and Public Involvement Division will be set up within the
Project Implementation Organization, and systems to incorporate the viewpoints of
patients and the public will be established in the research institutions and medical
institutions participating in the present project. Through these measures, broadbased information dissemination and publicity activities aimed at the general public
will be carried out, and a system to collect the views of patients and the public and
reflect them in the project will be established. In addition, support will be provided
to develop the necessary human resources for PPI, and studies and discussions of
methods for more appropriate implementation of PPI, including the development of
a system for educating the general public, will be carried out.
The following points in particular should be noted with regard to implementing PPI.
• The project will aim to improve literacy with regard to research and medical
care using genome information through generalized public awareness and
education and awareness activities with clearly defined targets to foster a
social environment in which no disadvantage is caused by genome
information.
• Measures will be carried out to increase the transparency of implementation
of the present project, such as incorporating the viewpoints of patients and the
public, formulating policies on data traceability and utilization, and providing
the necessary explanations of these policies.

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