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. 2024 Oct 18;26:e55441. doi: 10.2196/55441

Table 1.

Overview of lived expertise researchers’ involvement in projects conducted by the Youth Mental Health and Technology team.

Role in project Nature of lived expertise researchers’ involvement in project Stage of project when this occurred
Listener is given information
  • Grant funding needed to be sought before hiring lived expertise researchers, so the major responsibilities of these roles had been designed before lived expertise researchers joined the team.

  • Preparationa

Cothinker is asked to give opinion

  • Lived expertise researchers are included in regular team meetings during which new projects or grant proposals are being discussed, researchers provide updates on ongoing projects and troubleshoot problems, and findings from data analysis are discussed and interpreted.

  • Preparation

  • Executionb

  • Implementationc

Advisor gives unsolicited advice
  • Lived expertise researchers work alongside academic researchers as part of working groups that are developing new digital tools and helping to design user flow and content.

  • Preparation

  • Execution

  • Implementation

Partner works as an equal partner.
  • A lived expertise researcher has contributed to designing procedures for an ongoing clinical trial, as part of which they perform the role of “Digital Navigator,” assisting young people to understand how to use a novel digital tool. This included partnering with the academic lead to design technology implementation protocols, role descriptions, and qualitative data collection tools. This lived expertise researcher has also assisted with recruitment and data collection and is a co–first author on publications about the novel role that they have performed in this trial.

  • Lived expertise researchers have coled the development and ongoing running of a lived expertise working group and have coled qualitative workshops. This has included creating protocols, assisting with ethics proposals, recruiting members, organizing meetings, collecting evaluative data, and contributing to outputs.

  • Preparation

  • Execution

  • Implementation

Decision maker takes initiative (final) decisions
  • A lived expertise researcher has developed an information workshop to translate the Brain and Mind Centres Model of Care (that underpins the digital tools we are developing) to young people. This will be delivered to health services and evaluated.

  • Implementation

aPreparation stage includes developing ideas, formulating questions, financing, and ethical approval.

bExecution stage includes recruiting study subjects, choosing instruments, data collection, and data analysis.

cImplementation stage includes report writing, dissemination in the media, and translation to practice.