Is Online as Good as the Lab? Retesting, Refining, & Revolutionising Online Approaches in Autism Research

在线和实验室一样好吗?

基本信息

  • 批准号:
    ES/X011720/1
  • 负责人:
  • 金额:
    $ 63.51万
  • 依托单位:
  • 依托单位国家:
    英国
  • 项目类别:
    Research Grant
  • 财政年份:
    2023
  • 资助国家:
    英国
  • 起止时间:
    2023 至 无数据
  • 项目状态:
    未结题

项目摘要

Social scientists are adapting their methods for the online environment, which accelerated after March 2020. Online approaches have been crucial for autism research as many autistic adults were clinically vulnerable and unable to attend in-person studies during the pandemic. These approaches, as we have been pioneering, are turning out to be a powerful way to engage an incredibly large, diverse, and inclusive group of autistic people in social science research.Further, online approaches are going a long way to reducing longstanding problems of in-person research, such as inaccessible laboratory facilities (e.g., due to autistic people's sensory sensitivities). They are also slashing the financial, environmental, and psychological costs of participants travelling to research centres. Moving forward, there is clearly an ongoing need for online approaches to advance understanding of autism and support autistic people. Critically, however, several fundamental questions must first be addressed: How do autistic people experience online research? Does it feel as valuable as in-person studies, and what is the best online method to involve autistic people in designing research? Who are the autistic people in online samples, including those who 'self-identify' as autistic, and are they representative of the autistic population? Are online autism studies even as valid and reliable as laboratory approaches, and could they be improved? In a first-of-its-kind project, developed with autistic adults, staff at the National Autistic Society (NAS), and a UK-based online research platform (Prolific), we will address these important questions. First, we will investigate what autistic people really think and feel about online compared to in-person research. This will double up as a novel way to compare the breadth and depth of insights generated using different online methods (e.g., different sized and structured focus groups and surveys). The analysis of rich, qualitative data will feed into new guidelines for engaging autistic people, both as participants and partners in the online research process. Second, a large online study will survey 4000 autistic and non-autistic people. Participants will complete in-depth questions about their social background, a test of general mental ability, and information about autism and other diagnoses. Using advanced statistics, co-developed with autistic people, we will compare online data to existing population-level results. These analyses will be conducted for the very first time in the field, revealing insights into online autism samples, and making new discoveries about autistic adults more generally. Our data will also form the world's first freely accessible neurodiversity database. Allowing researchers from anywhere in the world to recruit participants and build on our data, this will revolutionise autism and neurodiversity research.Third, using recently developed social cognitive tests, we will conduct the world's first comparison of how autistic people perform online to the lab. A series of advanced analyses will provide much-needed insight into whether online cognitive tests are as valid and reliable as in the lab. We will also ask autistic people how they felt about participating, comparing their online and lab experiences, and learn new lessons about how these approaches could be improved. Together, this will generate new ideas on the best ways to conduct online and in-person research in autistic and non-autistic adults.Overall, this innovative project is at the vanguard of retesting, refining, and revolutionising online approaches, towards firmly embedding them in future autism, neurodiversity, and social science research. Our findings will be widely publicised through i) world-class academic papers and conferences, and ii) an international online knowledge exchange event for scientists and other stakeholders (e.g., neurodivergent people, clinicians, policymakers).
社会科学家正在调整他们的方法,以适应在线环境,这种环境在2020年3月之后加速。在线方法对自闭症研究至关重要,因为许多自闭症成年人在临床上很脆弱,在大流行期间无法参加面对面的研究。这些方法,正如我们所开创的那样,正在成为一种强大的方式,可以让一个令人难以置信的庞大、多样化和包容的自闭症患者群体参与社会科学研究。此外,在线方法在减少面对面研究的长期问题方面还有很长的路要走,比如无法进入实验室设施(例如,由于自闭症患者的感官敏感性)。他们还削减了参与者前往研究中心的财务、环境和心理成本。展望未来,显然需要在线方法来促进对自闭症的理解和支持自闭症患者。然而,至关重要的是,必须首先解决几个基本问题:自闭症患者如何体验在线研究?它是否和面对面的研究一样有价值?让自闭症患者参与设计研究的最佳在线方法是什么?在线样本中的自闭症患者是谁,包括那些“自我认同”为自闭症患者的人,他们代表自闭症人群吗?在线自闭症研究是否与实验室方法一样有效和可靠?它们是否可以改进?在与自闭症成年人,国家自闭症协会(NAS)的工作人员和英国在线研究平台(多产)共同开发的首个此类项目中,我们将解决这些重要问题。首先,我们将调查自闭症患者在网上的真实想法和感受,并与面对面的研究进行比较。这将作为一种新颖的方式来比较使用不同在线方法(例如,不同规模和结构的焦点小组和调查)。对丰富的定性数据的分析将为自闭症患者的参与提供新的指导方针,无论是作为在线研究过程的参与者还是合作伙伴。其次,一项大型在线研究将调查4000名自闭症和非自闭症患者。参与者将完成关于他们社会背景的深入问题,一般心理能力的测试,以及有关自闭症和其他诊断的信息。使用与自闭症患者共同开发的高级统计数据,我们将在线数据与现有的人口水平结果进行比较。这些分析将首次在该领域进行,揭示对在线自闭症样本的见解,并更普遍地对自闭症成年人进行新的发现。我们的数据还将形成世界上第一个免费访问的神经多样性数据库。让世界各地的研究人员都能招募参与者,并以我们的数据为基础,这将彻底改变自闭症和神经多样性研究。第三,使用最近开发的社会认知测试,我们将进行世界上第一次自闭症患者在线表现与实验室的比较。一系列先进的分析将为在线认知测试是否像实验室一样有效和可靠提供急需的见解。我们还将询问自闭症患者对参与的感受,比较他们的在线和实验室体验,并学习如何改进这些方法的新课程。总的来说,这个创新项目是重新测试、改进和革新在线方法的先锋,旨在将它们牢固地嵌入未来的自闭症、神经多样性和社会科学研究中。我们的研究结果将通过i)世界级的学术论文和会议,以及ii)科学家和其他利益相关者(例如,neurodivergent人,临床医生,决策者)。

项目成果

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Punit Shah其他文献

Interoception: The Eighth Sensory System: Practical Solutions for Improving Self-Regulation, Self-Awareness and Social Understanding of Individuals with Autism Spectrum and Related Disorders
内感受:第八感觉系统:改善自闭症谱系和相关疾病患者的自我调节、自我意识和社会理解的实用解决方案
Neurodiversity: Towards an interdisciplinary approach
神经多样性:迈向跨学科方法
  • DOI:
    10.1177/27546330231187565
  • 发表时间:
    2023
  • 期刊:
  • 影响因子:
    0
  • 作者:
    Punit Shah;Joni Holmes
  • 通讯作者:
    Joni Holmes
Proteomics approach to study Botrytis cinerea secreted proteins under different growth conditions
研究不同生长条件下灰葡萄孢分泌蛋白的蛋白质组学方法
  • DOI:
  • 发表时间:
    2008
  • 期刊:
  • 影响因子:
    0
  • 作者:
    Punit Shah
  • 通讯作者:
    Punit Shah
Probing short-term face memory in developmental prosopagnosia
探索发育性面容失认症的短期面部记忆
  • DOI:
    10.1016/j.cortex.2014.10.006
  • 发表时间:
    2015
  • 期刊:
  • 影响因子:
    3.6
  • 作者:
    Punit Shah;Anne Gaule;S. Gaigg;G. Bird;R. Cook
  • 通讯作者:
    R. Cook
Electronic communication in autism spectrum conditions
自闭症谱系条件下的电子通信
  • DOI:
  • 发表时间:
    2020
  • 期刊:
  • 影响因子:
    6.2
  • 作者:
    L. A. Livingston;Chris Ashwin;Punit Shah
  • 通讯作者:
    Punit Shah

Punit Shah的其他文献

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