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Partners in Research - Neuroprogressive and Dementia
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10th March 2023
Over the last year, the Patient and Public Involvement group of the NHS Research Scotland Neuroprogressive and Dementia Network has been co-developed into Partners in Research.
The network has reshaped their strategy to have people with lived experience at the heart of all they do.
Here we explore recent projects and if you would like to hear more about Partners in Research or get involved, please contact TAY.ppipartners@nhs.scot.
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A platform to share stories
Partners in Research worked with Palgrave Publishers to write a book entitled "Challenging Assumptions Around Dementia: User-led research and untold stories." A book launch will take place on 1st September, where co-authors will share their experience of writing the book together. Express your interest in attending the event.
A co-production strategy for research in Scotland
A core team of people with lived experience of dementia have been holding workshops with healthcare professionals, and people who are working in the field of dementia or neuroprogressive diseases, to explore different peoples understanding of research and co-production. Over the next few months, Partners in Research will be holding workshops which focus on ethics in research, as well as exploring the role of research for third sector organisations.
Development of research proposals
Partners in Research have also been working with various researchers to help develop research proposals, including research into self-care opportunities for unpaid carers, music and movement in dementia, and the use of technology for reminiscence. Involvement can range from consultation on pre-existing research documents, to design and development of research materials, and co-facilitating data collection and analysis. Over the next year our focus will be on developing research proposals led by people with lived experience. In addition, we are keen to build stronger ties with people affected by neuroprogressive conditions including Parkinsons, Huntingtons, MS, and MND.
We strongly believe that the active inclusion of people with lived experience of a health condition in the design, development, and execution of research is essential. For this reason, we intend to bring people with lived experience of neuroprogressive conditions and dementia to the centre of the Network’s activities. We have started this with our reinvigorated PPI group who named themselves “Partners in Research” and have ambitious plans to develop this in the future.
NRS Neuroprogressive and Dementia Strategy 2022–2027
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