BREATHE works closely with patients and the public to make sure health data is used transparently and responsibly, and for the benefit of those with respiratory conditions.
From the seed of an idea, to establishing and growing the Hub, patients and members of the public have been involved in BREATHE every step of the way. This partnership is fundamental to improving our work and strengthening our impact.
Patients and members of the public are included at the highest levels of decision making. Two lay representatives sit on both the BREATHE Board of Directors, and our External Advisory Board. Together, they ensure that patient and public views are considered in any strategic discussions.
All applications to access data via BREATHE are reviewed by members of the public. This ensures that any requests for access to health data have public scrutiny embedded in the approval process.
BREATHE's Curiosity Group is our growing network for patients and members of the public who are interested in our work, providing a platform to share their views, help shape our work, and make a difference.
“As Lay Leads, we have been described as acting as BREATHE’s ‘collective conscience’. Where others in the team may risk getting carried away with scientific excitement, we keep a patient perspective in mind–the team listen, and either stop that activity, explain it more clearly, or approach it in a different way.”
Antony Chuter, Lay Lead and Board of Directors member, BREATHE
Join our Curiosity Group today and help us create better outcomes for people with respiratory illnesses.
Members can choose how much or how little they want to get involved in shaping BREATHE activity, with three levels of participation.
Stay in touch with our newsletter for patients and the public, featuring the latest updates and opportunities
Share your thoughts and inform our work with the chance to participate in surveys and polls
Shape BREATHE activity as part of our core patient advisory group, with the chance to get involved in projects, events and input to materials
We are currently recruiting membership to all three Levels - whether you wish to receive updates on activity, provide opinions through surveys and polls or join our core patient advisory group.
Contact us for more details on BREATHEgetinvolved@ed.ac.uk or sign up below!