Health and Global Policy Institute (HGPI) formulated “Reflecting on Involvement of People with Lived Experience in Prefectural Healthcare Planning Processes – To Promote Meaningful Involvement in Prefectures and Municipalities.”

To promote meaningful involvement of people with lived experience, such as patients, people living with health conditions, their families and carers, service users, and other members of the public, in prefectures and municipalities, HGPI organized a national conference for local governments on November 11th 2024.

These Discussion Points summarize the challenges surrounding the involvement of people with lived experience, such as patients and other stakeholders, in local government policymaking processes, based on discussions held by experts, specialists, and local governments who participated in the conference. They also outline the necessary actions required to address these challenges. In addition, the document compiles numerous concrete initiatives and best practices from prefectures and municipalities across Japan. For details, please view the PDF provided bottom.

Discussion Point 1: Ensuring fair selection of patient advocate committee members for involvement in in government committees

1-1. Establishing appropriate terms of appointment for committee members according to circumstances in the region or disease area
1-2. Adopting flexible appointment methods to ensure patient advocate committee members are well suited to the purpose of the government committee

Example 1: Taking diversity in diseases, age groups, etc. into account when appointing multiple committee members
Example 2: Inviting committee members from other regions
Example 3: Adopting a broader range of conditions for people to be defined as “patients” or “affected parties”

1-3. Publicly presenting information regarding the appointment process and requirements for patient advocate committee members in advance and ensuring fair appointments

Discussion Point 2: Methods of operating government committees that facilitate discussion participation for patient advocate committee members

2-1. Providing sufficient pre and post meeting explanations and follow ups

Example 1: Providing explanations tailored to the needs of individual patient advocate committee members in advance
Example 2: Providing psychological support after meetings

2-2. Operating government committee meetings so patient advocate committee members can participate in discussions and offer comments more easily

Discussion Point 3: Utilizing various methods to collect and aggregate opinions from a vast range of people with lived experience of health concerns

3-1. Establishing government committees centered on people with lived experience

Example 1: Securing participation opportunities through opinion exchange sessions

3-2. Making effective use of hearings, surveys, and public comments

Discussion Point 4: Building cooperative and collaborative relationships with a wide range of people with lived experience of health concerns

4-1. Providing information in a thorough manner and devising methods of disseminating information tailored to its main target audience

Example 1: The effects and efforts of gathering public comments as an integrated part of Medical Care Plans

4-2. Using a variety of procedures and related initiatives to build cooperative relationships with a wide range of people with lived experience

Example 1: Using a peer supporter training program to recruit patient advocate committee members

4-3. Engaging in multi stakeholder collaboration to educate people with lived experience and to establish a social infrastructure that supports meaningful involvement

Example 1: Collaborating with multi stakeholders to encourage meaningful involvement
Example 2: Identifying and visualizing necessary personal qualities for meaningful involvement