The power of lived experience

 

Inspired to get involved in shaping brain health research? More than ever before, research organizations and funders of all kinds — from wmnHealth to hospitals, health charities to government — are engaging people with lived experience in the research process. 

Here are a few organizations connecting patients to others:

Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit research organization in the United States. Its mission is to fund research that helps people make better-informed healthcare decisions based on their needs and preferences.

SPOR Networks are collaborative research networks in Canada bringing together patients, researchers, healthcare professionals, policymakers, and other stakeholders. For example, ACCESS Open Minds is connecting patients and youth with researchers, healthcare professionals, and decision-makers bringing to address adolescent and youth mental health and well-being.

wmnHealth! Yes, we’re funding and conducting research studies on women’s mental and neurological health that take gender and diversity into account. These studies won’t succeed without people with lived experience, their caregivers, and others sharing their experiences with us. Our current study, Discrimination and Mental Health in Our Community is looking at how discrimination impact women’s mental health, so we can design better solutions to help limit and address the impact of everyday discrimination, including racism, sexism, and ageism.

References:

1. White, R., van den Eijnden, M., Donskoy, AL. et al. Lived experience involvement in research funding: taking a more systematic approach. Nat. Mental Health 1, 157–159 (2023).