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‘Conference Season’ learnings boosting patient and public involvement ambitions
13th August 2024
Patient and Public Involvement Lead of the NHS Research Scotland Neuroprogressive and Dementia Network (NRS NDN), Dr Rosie Ashworth, has been sharing the work of the network, and learning from others at a range of recent conferences and workshops
The lead for Partners in Research – the patient and public involvement (PPI) groups for ENRICH Scotland and NRS NDN respectively – is now using those insights to inform fresh work including exciting plans for a new buddying scheme.
On 13 and 14 June, Rosie attended the Celebrating Scottish Research Conference – organised by the Scottish Dementia Research Consortium (SDRC), Brain Health Scotland, and NRS NDN – at the Apex Hotel Dundee.
During this, the extensive PPI work conducted by the NDN and ENRICH Scotland was with Rosie noting that the first day of the conference “included trios of presentations involving a person with lived experience, a researcher, and the third sector representative. We heard from people affected by Parkinson’s disease, Motor Neurone Disease, Multiple Sclerosis and Huntington’s disease.
“The collaborative trio format is one that Partners in Research advocated for at our last conference, and it was great to have this continue.”
The PPI Lead further noted examples of new drug studies and ways of reducing the length of time it takes to see whether an experimental drug is effective.
On the second day of the conference, Rosie highlighted more focus on dementia-related research, including examples of coproduction, adding: “We also learned more about the importance of looking after the brain and initiatives that have been used in schools to teach people about this at a younger age.”
Rosie was delighted that several of NRS NDN’S Partners in Research were in attendance, with one “doing a fantastic job of sharing his experience of being involved in Parkinson’s-related research as well as his experience of being a Partner in Research”.
Rosie also attended the British Society of Gerontology (BSG) Conference, which took place from 3-5 July at Newcastle University.
On the first day of the conference, work from Partners in Research and RICH Voices was presented, including a video about being involved.
Rosie said: “We know that there are several Partners in Research who were unable to join the video recording, but we will make sure there are other opportunities as soon as possible.”
New team member Rose Vincent also presented during the conference about her work with The Smarties, a co-production group of people with young onset dementia exploring volunteering.
Rosie noted that she “was lucky enough to be involved with The Smarties as a group facilitator” and that as part of the work, she was pleased that an insightful guide to co-production was created.
The PPI Lead was further invited to Leeds to join a discussion between researchers who work on co-research in the field of dementia.
She said: “It was an excellent workshop, and it felt great to be surrounded by a group of people who share the same core values and ethos towards co-research. I look forward to being able to share more about that at a future date.”
Rosie says the next significant step will be to explore a buddying scheme between current and prospective members of Partners in Research, adding: “We will also be continuing our PPI input request meetings, and our co-research projects for people affected by Parkinson’s disease and people affected by dementia.”
If you would like to get involved in any of this work, please email tay.ppipartners@nhs.scot.
