Lived experience leadership

Lived experience leadership (or consumer leadership, service user leadership, or patient leadership) in development, delivery, or evaluation of health policy, services, research or education refers to the application of collective experiential knowledge and expertise to decision-making and agenda-setting processes in health services and systems. [1] It differs from patient engagement and involvement initiatives, in which people with lived experience are more tokenistically consulted in initiatives with other health professionals maintaining decision-making power. [2]

  1. ^ Stewart, Stephanie; Scholz, Brett; Gordon, Sarah; Happell, Brenda (February 2019). "'It depends what you mean by leadership': An analysis of stakeholder perspectives on consumer leadership". International Journal of Mental Health Nursing. 28 (1): 339–350. doi:10.1111/inm.12542. PMID 30281898.
  2. ^ Scholz, Brett; Stewart, Stephanie; Pamoso, Aron; Gordon, Sarah; Happell, Brenda; Utomo, Bagus (February 2024). "The importance of going beyond consumer or patient involvement to lived experience leadership". International Journal of Mental Health Nursing. 33 (1): 1–4. doi:10.1111/inm.13282. PMID 38131453.