International Lived Experience Organisations

Lived Experience Power envisions forming a comprehensive global organisation dedicated to mapping, promoting, and enhancing lived experience advocacy and leadership opportunities. This organisation will serve as a central hub for the lived experiences of individuals and groups, creating a dynamic platform for empowerment, connection, and collaboration. The organisation will undertake the following key initiatives:

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1. Mapping Advocacy and Leadership Opportunities: Systematically catalogue consumer advisory groups and advocacy initiatives at local, state, national, regional, and global levels. This includes opportunities offered by mental health commissions and councils, consumer and family committees (CAFS), lived experience peak bodies, and international and global lived experience organisations.

2. Networking and Collaboration: Foster a global network where lived experience leaders can connect, share insights, and collaborate on initiatives.

3. Library of Resources: Provide an extensive library of resources, including advocacy toolkits, best practice guidelines, and case studies of successful lived experience initiatives. These resources will empower individuals and organisations to engage effectively in systemic change.

4. Feedback and Continuous Improvement: Establish mechanisms for users to provide feedback on the platform and suggest improvements, ensuring the organisation evolves to meet the needs of the lived experience community.

5. Global Data Collection and Reporting: Gather data on advocacy and leadership trends, identifying gaps, successes, and areas for improvement. Regular reports and insights will guide the development of lived experience initiatives globally.

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The global organisation will also report on lived experience advocacy and leadership opportunities worldwide. To ensure consistent and comprehensive data collection, all participating entities—including mental health commissions and councils, consumer and family committees (CAFS), lived experience peak bodies, and international and global lived experience organisations—will be required to routinely gather and submit data on the following key areas on a worldwide ledger. The ledger will collect the following information:

• Lived Experience Membership Numbers: Number of individuals with lived experience participating in various capacities.

• Carer Membership Numbers: Representation of carers involved in advocacy and leadership initiatives.

• Staff Numbers: Total number of staff within organisations supporting these efforts.

• Consumer, Carer, and Staff Demographics: Insights into age, gender, ethnicity, geographic distribution, and other relevant demographics.

• Website and Social Media Statistics: Usage analytics, including website visits, likes, tweets, shares, and other interactions.

• Email Communication Statistics: Metrics on emails sent, received, opened, and shared.

• Survey and Suggestion Box Data: Number of surveys conducted, response rates, and insights from suggestion boxes.

• Consultation, Interview, and Focus Group Data: The frequency and scope of consultations and interviews and the volume and quality of responses.

• Promotional and Outreach Activities: Organizational Promotion Metrics: Count and reach of promotional materials, such as flyers, mailouts, factsheets, press releases, brochures, newsletters, public displays, websites, and public meetings.

• Formal Consultation Data: Number and attendance levels for workshops, forums (both patient and public), online discussion groups, surveys, questionnaires, and webinars.

• Conference Metrics: Number of conferences organised, participation rates, and attendance at external conferences.

• Consultation Structure Data: Membership demographics and attendance levels for committees, communities of practice, advisory boards, interagency collaborations, boards, parliaments, and forums.

• Patient Feedback and Program Involvement: Engagement in training, education, program design, and development of informational resources.

• Co-Design Participation: Levels of involvement in co-creating care plans and lived experience initiatives.

• Co-Collaboration in System Development: Participation in designing and refining standards, training methodologies, professional development practices, career pathways, policies and procedures, employee hiring processes, practice support guidelines, databases, rights frameworks, business processes, models of practice, evidence bases, and technology.

 

This systematic data collection will enable the global organisation to provide accurate, transparent, and actionable insights into the state of lived experience advocacy and leadership worldwide. By analysing trends, identifying gaps, and sharing successes, the organisation will drive continuous improvement, strengthen global advocacy efforts, and amplify the impact of lived experience voices in shaping mental health systems and policies.

By creating this global lived experience advocacy and leadership platform, individuals with lived experience will have unprecedented access to opportunities, resources, and networks, fostering a worldwide movement for systemic transformation in mental health. This platform will amplify the voices of those with lived experience and facilitate their leadership in reshaping policies, practices, and perceptions across the mental health landscape.