Why?
To bring people affected by Parkinson’s (PaP), researchers and clinicians together to encourage dialogue and involvement in research so we can all better understand the disease and accelerate Parkinson’s research.
Who?
- Dundee Research Interest Group (DRIG), a group of people affected directly or indirectly by Parkinson’s
- MRC PPU researchers inc. Dario Alessi, Paul Davies, Miratul Muqit and Esther Sammler (and Andy Howden, previously MRC PPU now Cell Signalling and Immunology in SLS)
- Parkinson's UK
What?
The idea for the DRIG was conceived during discussions between PaP, MRC PPU researchers and clinicians and Parkinson’s UK at the MRC PPU in Nov 2016.
With the support of the Parkinson’s UK Research Support Network, the DRIG was launched in Jan 2017. The group is supported by Parkinson's UK and affiliated with the MRC PPU, with Esther Sammler and Andy Howden as Steering Group members.
Key activities include:
Research strategy and funding
- DRIG is an integral part of our Dundee Edinburgh Parkinson’s Research Initiative Advisory Group
- Two PaP sit on our MRC PPU Advisory Board that governs spend of fundraising donations
- PaP review PhD and grant applications, assisting with lay summaries and being joint applicants on research funding applications
- DRIG funded summer studentships
- MRC PPU hosts quarterly DRIG Steering Group meetings
- Talks at research fundraising events
Events and meetings
All of our events and meetings are designed with and for people affected by Parkinson’s to explore how the Parkinson’s community can impact and accelerate research. Examples include:
- Annual DRIG conferences
e.g. first DRIG Annual Conference in 2018 “Unveiling some of the mechanisms that trigger Parkinson’s” with 79 attendees, 65 of which were living with Parkinson’s
- Hosting national Parkinson’s community events e.g.
- Dundee Edinburgh Parkinson’s Research Initiative symposium Public Event (2018). Attended by key members of the Parkinson’s community in Dundee and Edinburgh, representatives of Parkinson’s UK and Cure Parkinson’s UK, potential donors and politicians. Marc van Grieken (DRIG Chair) and Sir Ian Wilmut spoke about how involvement in research impacts on their take on the condition. Local and international media coverage inc. The New York Times
- ‘The Key Challenges of Parkinson’s disease’ webinar (2021) to discuss challenges to Parkinson’s research, funding, networking and advocacy, with international guests speakers in all topics. Attended by over 100 participants from the UK, mainland Europe, Canada and the US
- “Connect and collaborate” Parkinson’s event (2022): inc. Parkinson’s UK’s leadership team visit, Scottish Research Interest Groups talk, MRC PPU research talks and facility tours and a focus on public and patient involvement
- DRIG and the MRC PPU enabled the Scottish Research Interest Groups to host Nobel Laureate Randy Shekman for a hybrid “Parkinson’s disease: up, close and personal” public lecture at the Royal College in Physicians of Edinburgh, with DRIG introducing and chairing (2022).
- Research workshops, talks and discussions at Parkinson’s community meetings (virtually and in person) e.g.
- Hands-on research workshop at Parkinson's UK Scottish Young People Residential Event attended by 135 people affected by Parkinson’s (2018)
- DRIG interviews with Dario, Miratul and Esther on ‘drug discovery for genetic forms of Parkinson’s’ for Cure Parkinson’s ‘Rallying to the Challenge Meeting (2021)’ – an annual meeting designed for and by PaP to explore how the Parkinson’s community can impact and accelerate research
- MRC PPU events and tours tailored to PaP/DRIG e.g.
- “Disrupting the downward spiral: How art may help living with Parkinson’s” event on Art and Parkinson’s with 20 attendees from across Scotland (inc. a presentation of the Unit’s Art-Science “Misprints” project)
- Over 25 attendees at a visit and lab tour in 2019, with PaP involvement in the organisation of the event to assess feasibility and practicalities
Press/media relations
Joint press releases and broadcast interviews, with local, national and international coverage.
Key outcomes
Our research is strengthened by meaningful input from people with lived experience of Parkinson’s. Our involvement activities enable us to:
- work together
- share our respective sides of the story
- motivate each other
- push boundaries
- share decision making
- identify areas of priorities by working effectively together
- constantly set new standards in research involvement
This open dialogue and collaboration between our scientists, clinicians and PaP is hugely motivating to all involved and ensures that our research is trusted and relevant.
The collaboration has been recognised as exemplary by the University of Dundee, the Medical Research Council (MRC) and UK Research and Innovation (UKRI):
- Commendation: University of Dundee Stephen Fry award for public engagement (2019) - Public Engagement Project of the Year
- Invited MRC Insight blog feature on our “Meet the Scientists laboratory tour” (Jan 2019)
- Included in “Examples of MRC Public Involvement”, Appendix 5 to the MRC’s public involvement landscape review (2023), as an example of a growing community of organisations and practitioners working towards embedding public involvement within non-clinical research
- Professor Dame Ottoline Leyser (UKRI Chief Executive) met with DRIG members during a visit of a delegation from UKRI. She later highlighted this collaboration as exemplary when presenting the UKRI’s five-year strategy at the V&A museum in Dundee (2023).