Marie Ennis-O’Connor, Head of Communications at INTERNATIONAL BUREAU FOR EPILEPSY, shared on LinkedIn:
“Meaningful patient partnership doesn’t begin when a study starts. It begins when patients have a voice in deciding which research gets funded.
Including patient partners in peer review is an important step towards research that reflects the priorities, needs and realities of the people it aims to serve. But participation alone isn’t enough. Patient partners need appropriate support, fair compensation, and recognition that lived experience is a form of expertise.
These new resources from the Canadian Institutes of Health Research’s Institute of Genetics and the Brain-Heart Interconnectome are practical guides for patient partners taking part in peer review. They also offer valuable insights for researchers, funders and review committees on how to create more meaningful and inclusive review processes.”
Marianne Sarcich, Founder of Breast Health 101 with Marianne, shared Marie Ennis-O’Connor’s post, adding:
” ‘Lived experience is a form of expertise.’
powerfully said, Marie Ennis-O’Connor MPRII, and so very true but not as widely accepted or understood as it should be. ”
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