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Focus on people with lived experience is key to network’s patient and public involvement aims

Focus on people with lived experience is key to network’s patient and public involvement aims

28th February 2024

NHS Research Scotland Neuroprogressive and Dementia Network Partners in Research Lead, Dr Rosie Ashworth to share learning at upcoming event

Public involvement is important, expected, and possible in all types of health and social care research.

With that in mind, the vibrant public involvement network shaped by NHS Research Scotland Neuroprogressive and Dementia Network (NRS NDN) is set to be spotlighted at an upcoming showcase of patient and public involvement (PPI) in research across Scotland.

The Network will focus on the creation of ‘Partners in Research’ and ‘Research in Care Homes (RICH) Voices’ during a workshop titled Aging, Caregiving, Cognitive Impairment. It will be part of a Patient and Public Involvement Event hosted by NHS Research Scotland and Chief Scientist Office of Scottish Government, taking place on 12 March at V&A Museum in Dundee.

The event celebrates the second anniversary of the Shared Commitment to Public Involvement – an important cross-sector UK initiative to help drive up standards in health and social care research.

The NRS NDN session will detail the establishment of these two important groups, people’s motivations to get involved in patient and public involvement, the types of activities they have chosen to be part of, and the learning gained throughout.

Last year, NRS NDN’s PPI group evolved into ‘Partners in Research’ when the Network decided to place people with lived experience at the heart of all of their activities – helping to inform the design, development, and execution of research as part of an ambitious, refreshed strategy.

Part of this was co-writing a book about the experiences of people living with dementia. The book was published by Palgrave Publishers and made available as a free eBook. It captures the experiences of different types of dementia with six of the co-authors living with its symptoms, and six of the co-authors supporting, or have supported, someone living with dementia as unpaid carers.

Additionally, the Partners in Research involvement has ranged from consultation on pre-existing research documents, to design and development of research materials, and co-facilitating data collection and analysis.

It has included workshops to explore different people’s understanding of research, ethics in research, as well as exploring the role of research for third sector organisations. The group has further worked with various researchers to help develop ideas for research into such areas as the use of technology for reminiscence, self-care opportunities for unpaid carers, and music and movement in dementia.

It is hoped that stronger links can also continue to be fostered with people affected by Parkinsons, Huntington’s, Multiple Sclerosis, and Motor Neurone Disease, with the aim of analysing commonality in underlying causes, patient experience, symptoms and their management, in turn encouraging inter-disciplinary research across a wide range of healthcare settings.

Expanding the settings for research has been an important tenet of the Public Involvement Strategy and Research in Care Homes (RICH) has invited people living or working in care homes to come together and explore areas of particular interest to them, while supporting research and research-related activities. Led by Enabling Research in Care Homes (ENRICH), the group works closely with NRS Ageing, and NRS Primary Care specialties, forming a more complete picture of a collaborative, interlinked, research ready landscape.

By involving the public, patients, carers, and people with lived experience, NRS NDN recognises that PPI is an essential part of delivering better health outcomes while improving the quality, reach, and impact of research; enhancing its relevance; and inspiring greater engagement and diversity so that a wider spectrum of voices can be heard.

This is more important than ever, given that dementia is considered to be one of the foremost public health challenges worldwide with the number of sufferers expected to double between 2011 and 2031 due to people living longer.

The hope is that the showcase of this positive work will help to inspire even greater focus on patient and public involvement and spotlight opportunities to take a truly collaborative approach to research that will help to improve future treatment and care.

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