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

德文郡郡和康沃尔郡的西南半岛人口年龄高于全国平均水平，包括贫困的农村和沿海社区，面临着影响医疗保健服务和健康研究机会的各种挑战。NIHR INCLUDE项目将生活在农村和偏远地区的人确定为目前健康研究服务不足的群体，其特征是研究参与程度较低，研究量不匹配的高医疗负担，健康结果较差，参与医疗干预的程度较低。这一人群被包括在其他确定的群体中，例如年龄极端的人和经历数字排斥/劣势的人。提供有效的医疗保健需要精心设计的健康研究。随机试验是医疗保健研究的基本要素，需要大量资源。在任何环境下进行试验都可能具有挑战性，但在农村和沿海环境中尤其困难。新型冠状病毒疫情见证了利用远程方法和数字技术提供护理和研究的新模式的发展。帕金森病（PD）是一种与年龄相关的神经退行性疾病，是全球增长最快的神经系统疾病。与其他疾病领域一样，试验交付受到招募缓慢和保留率低的影响。此外，研究人群不能代表患有该疾病的人群，这意味着试验结果不可推广。随着人口老龄化，西南半岛的PD患病率高于全国平均水平。该奖学金的目的是探索农村和沿海社区帕金森氏症（PwP）患者参与试验的障碍和促进因素，特别是数字技术在支持参与和包容性方面的潜在作用。学生将包括3个工作包（WP 1-3）。WP 1将涉及对支持PD试验招募和保留的干预措施进行的系统性综述（正在普利茅斯大学进行）的扩展。学生还将对支持试验招募和保留的数字干预措施进行更新的系统性审查，重点关注神经退行性疾病。工作方案1的调查结果将为工作方案2的专题指南提供信息，并可能确定工作方案3的干预措施。在WP 2中，学生将进行定性研究（包括焦点小组和半结构化访谈），探索农村和沿海社区参与医疗保健和对PwP临床试验参与的态度，以及个人强调的感知障碍/促进因素，特别是与农村和/或沿海生活的关键特征（如物理，社会和技术环境）相交的任何障碍/促进因素。该研究将允许探索干预措施，以支持可能跨地区翻译的试验参与，并了解可能需要定制解决方案的地方。WP 3将包括识别、开发和重复干预措施，以支持目标人群参与试验，从而制定SWAT评价方案。

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.