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

德文郡和康沃尔郡的西南半岛人口比全国平均年龄要大，包括贫困的农村和沿海社区，面临着各种挑战，影响着医疗保健的获取和健康研究的机会。国家卫生研究院的INCLUDE项目将生活在农村和偏远地区的人确定为目前卫生研究服务不足的群体，其特点是纳入研究的程度较低，与研究数量不匹配的高卫生保健负担，较差的健康结果和较低的参与卫生保健干预措施。这些人被包括在其他已确定的群体中，例如处于极端年龄的人和遭受数字排斥/不利的人。提供有效的卫生保健需要精心设计的卫生研究。随机试验是医疗保健研究的基本要素，需要大量的资源。在任何情况下进行试验都具有挑战性，但在农村和沿海地区尤其困难。在2019冠状病毒病期间，利用远程方法和数字技术开发了新的护理和研究提供模式。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不良的影响。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能推广。随着人口老龄化，西南半岛PD患病率高于全国平均水平。该奖学金旨在探索农村和沿海社区帕金森病患者（PwP）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）。WP1将涉及扩展正在进行的系统审查（正在普利茅斯大学进行），以支持PD试验招募和保留的干预措施。该学生还将对支持神经退行性疾病试验招募和保留的数字干预进行更新的系统回顾。WP1的研究结果将为WP2的主题指南提供信息，并可能确定WP3的干预措施。在WP2课程中，学生将进行一项定性研究（包括焦点小组和半结构化访谈），探讨农村和沿海社区参与医疗保健和临床试验的态度，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）交叉的障碍/促进因素。这项研究将允许探索干预措施，以支持可能在各地转化的试验参与，并了解可能需要定制解决方案的地方。WP3将包括识别、开发和迭代干预措施，以支持目标人群参与试验，从而制定SWAT评估协议。

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.