Promoting Parkinson's disease trial participation in rural and coastal communities

The South West Peninsula of Devon and Cornwall comprises a population that is older than the national average and includes deprived rural and coastal communities, with various challenges that impact healthcare access and health research opportunity. The NIHR INCLUDE project identified people living in rural and remote areas as a group currently under-served by health research, characterised by lower inclusion in research, high healthcare burden that is not matched by research volume, poorer health outcomes and lower engagement with healthcare interventions. This population are included in other identified groups, such as people at age extremes and those experiencing digital exclusion/disadvantage.

Delivery of effective healthcare requires well-designed health research. Randomised trials are an essential element of healthcare research, requiring substantial resources. Delivering trials can be challenging in any setting, but becomes particularly difficult in rural and coastal settings. Covid-19 has seen the development of new models of care and research delivery utilising remote methodologies and digital technologies. Parkinson's disease (PD), an age-related neurodegenerative disease, is the fastest growing neurological condition worldwide. As in other disease areas, trial delivery is impacted by slow recruitment and poor retention. Additionally, study populations are not representative of the population living with the disease, meaning that trial findings are not generalisable. With an ageing population, the South West Peninsula has higher prevalence of PD than the national average.

The aim of this studentship is to explore the barriers and facilitators of trial participation for people with Parkinson's (PwP) in rural and coastal communities, and in particular the potential role of digital technologies in supporting engagement and inclusivity.

The studentship will encompass 3 work packages (WP 1-3). WP1 will involve an extension of an ongoing systematic review (being undertaken at University of Plymouth) of interventions that support trial recruitment and retention in PD. The student will also undertake an updated systematic review of digital interventions that support trial recruitment and retention with a focus on neurodegenerative disease. The findings from WP1 will inform the topic guide for WP2 and may identify interventions for WP3. In WP2 the student will undertake a qualitative study (comprising focus groups and semi-structured interviews) exploring engagement with healthcare and attitudes to clinical trial participation in PwP within rural and coastal communities, and the perceived barriers/facilitators highlighted by individuals, in particular any that intersect with key characteristics of rurality and/or coastal living such as the physical, social and technological environment. The study will allow for exploration of interventions to support trial participation that might translate across localities, and understanding of where bespoke solutions may be needed. WP3 will comprise the identification, development and iteration an intervention to support trial participation in the target population, leading to the development of a protocol for evaluation in a SWAT.