Ideas for Positive Change (Durham Book Festival)

What positive change might come from putting lived experience at the heart of health research?

In the past year people experiencing ‘Long Covid’ have found each other online, named and defined their own disease, conducted research, and published papers. These impressive achievements show the positive change that can be achieved when people with lived experience are at the heart of research - as equal participants, not just as subjects. The Institute for Medical Humanities (IMH) has long advocated this approach.

This video, featuring IMH Director Prof Jane Macnaughton and PhD students Katharine Cheston and Ariel Swyer, showcases three examples of research at the Institute. Their explorations of breathlessness, so-called ‘medically unexplained symptoms’ and hearing voices help shine a light on experiences that can’t be objectively measured using current biomedical methods or models.

They argue that, despite the challenges of the pandemic, perhaps one positive change might be a shift towards taking the voices of experience more seriously, particularly for health concerns which are invisible, stigmatised, unacknowledged or unspeakable. And in putting these experiences at the heart of research we step closer to finding ways to help improve lives.

As part of the series a new video will be posted every day. Our video will be posted on Monday 11 October at 12.30pm. Follow this link to see our video and the others in the series Durham Book Festival Ideas for Positive Change

The speakers will be available to answer questions on Twitter @RJMacnaughton @kacheston @ArielSwyer