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Table 1 Positive Impacts of Engaging the Voices of People with lived experience

From: People with lived experience (PWLE) of depression: describing and reflecting on an explicit patient engagement process within depression research priority setting in Alberta, Canada

Positive Impacts of Engaging the Voices of people with lived experience

1. Stories shared by persons with experience of depression (including caregivers) deepen the understanding of others, such as how depression treatments and treatment plans play out in “real life” across individuals, and how this impacts their quality of life.

2. Shared experiences ground priority setting discussions, strategies, and plans in what is important to, and feasible for patients (vs. what is of interest and efficient for clinicians and researchers in new knowledge creation).

3. Perspectives of people with lived experience challenge researcher and clinician assumptions or stereotypes regarding people with lived experience of depression, such as:

 a. Their depth and breadth of their knowledge (e.g. on the clinical field of depression treatments);

 b. Their openness to listen to clinical perspectives;

 c. How their lived experience informs their views on different issues and treatments;

 d. The value of their contributions and pragmatic suggestions in enriching the quality of priority setting study design and implementation;

 e. Their willingness and ability to come to consensus with equally willing clinicians and researchers who were open to being informed by their experience.

4. Lived experience perspectives also enrich data interpretation and analysis (e.g. lived experience informs how they would interpret qualitative responses or data provided by other people with lived experience). Sharing this can shift the understanding and interpretations of clinicians and researchers.