Patient and Public Involvement Online in National Whole-genome Sequencing Project in Japan

Abstract

The Japanese government developed a national-level whole genome sequencing project in December 2020, which is expected to promote precision medical care for cancer and rare disease patients. Since this is a nationwide project, there is a need for implementing patient and public involvement (PPI). Considering the current COVID-19 pandemic, we conducted online PPI to formulate the contents of the project's informed consent form (ICF) for participation. This online PPI aimed at gaining insights from cancer patients and their family members regarding the ICF. A one-day seminar was conducted online in September 2021, which included three lectures related to the national project, followed by discussion among the attendees divided into two groups based on their age and types of cancer. We had eight attendees who were cancer patients and/or their family members. They discussed the ICF's contents based on the draft developed by the project's research team. Online PPI has its merits and drawbacks. It allows for easier participation and is beneficial for patients who are unable to physically attend either because of their medical condition or geographical location. For the researcher also, it becomes easier to recruit a diverse variety of people who wish to join the PPI activities. In contrast, at times, participants find it difficult to use online devices. Moreover, the attendees may not feel comfortable with the online discussions owing to the lack of nonverbal expression and interactions when compared with personal interaction. For promoting PPIs in the future, we recommend considering the following three crucial aspects:practicing online PPI in a variety of situations, constructing a framework that enables PPI quickly, and promoting diversity in the attendees participating in such PPI activities. Copyright:©2022 the Japanese Society of Clinical Pharmacology and Therapeutics (JSCPT)