About the group
The Whitworth group (Mariangels Ferrer-Duch, Nichola Garde, Nick Jordan, Rhona MacLeod, Romona Moldovan, Jay Roche, Fiona Ulph) have been collaborating in subgroups for many years. Combined, we have expertise in the Media, Communications, Psychology, Genetic Counselling, Patient and Public Involvement, Narrative practices, Rare disease and Qualitative research methods.
The group has a shared interest in the definition of ‘rare’ and what that means to us all. And led to us developing “RARE” – a project funded by the ESRC via the University of Manchester.
“RARE” aims to stimulate and capture public conversation about one of the biggest changes in how we think about health – what does it mean to have a rare disease and how we all may become “RARE” when genomics becomes part of mainstream healthcare. This project will focus on the psychological, ethical and economic debates and in turn show how social science is helping to shape the health care of the future.
The central thread of “RARE” comprises is a series of publicly accessible conversations (initially as a podcast series) which explore the concept of “RARE” – how it is already impacting on our lives, and we can alter that impact. They are hosted by Nichola Garde, teacher and consultant to the Manchester Centre for Genomic Medicine’s Science and Training programme on communication skills & Mariangels Ferrer-Duch, clinical psychologist and narrative therapist, and consultant to the Manchester Centre for Genomic Medicine’s service improvement initiative). “RARE” is novel as it utilising narrative expertise to ensure the conversations are able to address and hopefully reduce the stigma and isolation often encountered by those with a rare disease.
The podcast content will be used by the Whitworth Group to co-create two public events with a patient representative group – a Rare disease day event at the Whitworth Gallery (29th February 2020) and a live podcast at a festival (July, 2020). At both of these events the public will be asked to share their perceptions of what “rare” means.
“RARE” aims to trigger conversations and debates across society about the implications of developments in rare diseases and genomic medicine.
We will do this by:
- Creating a series of publicly available “conversations” (podcasts) covering the ethical, psychological, economic, and education considerations around developments in rare diseases and genomic medicine
- Design all our public materials and events using the latest thinking in communications to ensure that we communicate clearly about social science and enable all to engage in conversations.
- Ensuring that public events are co-created with members of the public, patients and practitioners
- Embedding knowledge from narrative theory to address the stigma and isolation often encountered by those diagnosed with a rare disease.
- Enable attendees at our events to contribute their thoughts and reactions via a number of mediums
- Ensuring that the core issues emerging from these conversations are fed back to researchers, policy makers, practitioners to ensure that research and practice are shaped by these conversations.
To address and reduce the stigma and isolation encountered by those with a rare disease by striving to achieve three goals:
1. To make accessible to all the lived experience of and latest research about rare diseases.
2. To stimulate new conversations about what it means to have a rare disease.
3. To ensure rare disease research is informed by these experiences and conversations.