Why?
Interactions between people with Parkinson’s, carers and researchers are often limited to research talks or visits to laboratories. These interactions are hugely beneficial to all involved and improve the understanding of research developments, but the opportunity for deeper conversations – particularly around the complexities and ambiguities of the lived experience of Parkinson’s and of the research process itself – can be limited in these settings.
We identified a need from our previous "Misprints" project to develop a creative resource that inspires deep, meaningful exchanges between Parkinson’s researchers and people with lived experience of Parkinson’s to further increase patient involvement in our research.
Who?
- Dr Paul Davies, MRC PPU Academic Lead for Public Engagement
- Prof Miratul Muqit, Scientific & Clinical Lead for Project
- Sarah Patrick, Public & Patient Involvement & Engagement Consultant (Associate Staff)
- Daksha Patel, Freelance Artist
- 17 MRC PPU researchers
- 9 people with lived experience of Parkinson’s (including 2 carers)
- Researcher from the University of Dundee’s School of Humanities, Social Sciences and Law
Co-creation with people with lived experience of Parkinson’s
MRC PPU researchers worked with external artist Daksha Patel to create art card drawings to represent our Parkinson’s research and the Parkinson’s symptoms observed by Prof Miratul Muqit in his Consultant Neurologist role.
17 of our researchers and 9 local people with lived experience of Parkinson’s (inc. carers) reviewed the art card drawings and co-created our interpretive art card activity, ensuring our final resource meets the needs of the Parkinson's community:
- Discussed how to better represent their research or lived experience through the drawings
- Decided black and white drawings were preferred over colour to support personal interpretation of the art cards
- Input what new art cards were needed to include all participants’ experiences of Parkinson’s
- Tested different ways to use the art cards with question prompts such as “What does Parkinson’s mean to you?” to support deeper conversations.
To ensure accessibility, we also:
- Tested the colours, sizes and thickness of the cards and box to ensure they meet the needs of people with Parkinson’s
- Set up a webpage (linked from a QR code on the card box) to enable the translation of the questions & instructions cards into any language.
This co-creation has enabled us to produce a final resource that meets the needs of all involved.
We invited those with lived experience of Parkinson’s and our researchers to use ‘Exchanges’ together in pairs (Sept 2022) and captured the resulting, powerful exchanges on film.
Key outcomes
- Initial experiences of the art card resource being used between a person with lived experience of Parkinson’s and a researcher generated striking levels of engagement, breaking down barriers and prompting profound conversations about Parkinson’s and Parkinson’s research.
- We discovered that the resource has an even greater/wider impact than originally anticipated – it is successful at prompting discussions about the emotional and physical challenges of Parkinson’s amongst people with lived experience of Parkinson’s (people affected by Parkinson’s and carers) without the presence of researchers too.
- Unexpectedly, the resource also supports deep conversations about Parkinson’s in a group setting as well as in pairs, with participants advocating future use at conferences, in support groups, and in clinical settings.
The project was accepted for poster presentation at the World Parkinson’s Congress 2023 in Barcelona.
World Parkinson’s Congress Presentation
Sarah Patrick and Daniel Saarela, PhD Student with Dario Alessi, presented ‘Exchanges’ at the World Parkinson’s Congress 2023 in Barcelona (July 2023).
They shared their experiences of ‘Exchanges’ and why this is such a valuable resource – not only to support further patient involvement in Parkinson’s research, but to highlight the benefits to the wider Parkinson’s community and stimulate discussion about future use and potential partnership working to maximise impact.
Download the pdf: PDF Poster
There was great excitement for the resource in the wider Parkinson’s community, with card packs being taken home to all corners of the world by people with lived experience of Parkinson’s, support group leaders, researchers, health professionals, colleagues in industry, and Parkinson’s charities.
Future plans
We are delighted by the enthusiasm for and interest in the ‘Exchanges’ resource amongst the Parkinson’s community. We are now planning the next steps for the project, having great discussions with colleagues and charities, to ensure the resource can be shared with maximum impact.
Contact
To discuss any aspect of this project, please email:
Sarah Patrick, Public & Patient Involvement & Engagement Consultant
Parkinsons-Exchanges@dundee.ac.uk