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Patient Science: Citizen Science Involving Chronically Ill People as Co-Researchers 病人科学:以慢性病患者为联合研究者的公民科学
Pub Date : 2022-05-23 DOI: 10.35844/001c.35634
N. Heyen, J. Gardecki, D. Eidt-Koch, M. Schlangen, Sophie Pauly, Olaf Eickmeier, T. Wagner, T. Bratan
Citizen science projects in health-related research usually follow a crowdsourcing approach where laypersons primarily have a supplying role in data collection. By contrast, this article presents an approach on a much higher engagement level (co-creation) where a team of professional and citizen scientists jointly plans, implements, and evaluates a scientific study on a chronic disease from which the citizen (patient) scientists themselves suffer. We call this approach patient science; it systematically makes use of the patients’ expertise of living with the disease. This article describes the pilot project and conceptual differences compared to other participatory approaches in medical and health research. It elaborates on the implications of involving chronically ill people as co-researchers and, finally, reflects on the benefits and challenges of patient science.
健康相关研究中的公民科学项目通常采用众包方法,非专业人员主要在数据收集中发挥供应作用。相比之下,本文提出了一种更高参与水平(共同创造)的方法,由专业科学家和公民科学家组成的团队共同规划、实施和评估一项关于公民(患者)科学家自身所患慢性病的科学研究。我们称这种方法为病人科学;它系统地利用了患者与疾病共存的专业知识。本文介绍了试点项目以及与其他参与式医疗卫生研究方法相比的概念差异。它详细阐述了让慢性病患者作为联合研究人员参与的意义,并最终反思了患者科学的好处和挑战。
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引用次数: 6
Evaluating Community Co-Design, Maintenance and Ownership of Green Spaces in Underserved Communities Using Participatory Research 利用参与式研究评估服务不足社区的社区共同设计、维护和绿色空间所有权
Pub Date : 2022-05-23 DOI: 10.35844/001c.35632
Lizzie Caperon, R. McEachan, Charlotte Endacott, S. Ahern
Green space is beneficial for health, and the co-design of green spaces is vital to allow community input into their development and encourage their use. However, to date there is limited evidence about the most effective ways to ensure the co-design, maintenance and ownership of green spaces by communities over time. Participatory methods such as transect walks with photovoice offer an opportunity to explore these issues. This study describes an original participatory project in a deprived, multi-ethnic part of Bradford, UK, which aims to use innovative participatory methods to explore how the maintenance, co-design and ownership of green spaces affect their use for health benefits. Participatory methods will be used to explore local community perceptions of and satisfaction with their local green spaces. Three phases of data collection will be conducted in a longitudinal qualitative study spanning 3 years. Each phase will use transect walks with photovoice and semi-structured interviews (n= 24), and focus groups (participant n=40) in four green space locations in Bradford, UK.
绿色空间有利于健康,绿色空间的共同设计对于允许社区参与其发展并鼓励其使用至关重要。然而,迄今为止,关于确保社区共同设计、维护和拥有绿色空间的最有效方法的证据有限。参与性的方法,如带着光声的样带行走,提供了一个探索这些问题的机会。本研究描述了英国布拉德福德一个贫困的多民族地区的原始参与式项目,该项目旨在使用创新的参与式方法来探索绿色空间的维护、共同设计和所有权如何影响其健康效益的使用。参与式方法将用于探索当地社区对当地绿色空间的看法和满意度。在为期3年的纵向定性研究中,将进行三个阶段的数据收集。每个阶段将在英国布拉德福德的四个绿地地点使用带影像语音和半结构化访谈的样带行走(n= 24)和焦点小组(参与者n=40)。
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引用次数: 1
Brief Report: Pitfalls and Potentials in Using Methods From Action Research and Systems Thinking When Engaging and Mobilizing Participants in a Community 简要报告:在参与和动员社区参与者时,使用行动研究和系统思考方法的陷阱和潜力
Pub Date : 2022-05-23 DOI: 10.35844/001c.35636
A. Hansen, Ida Foxvig, Gül Sakal, C. D. Klinker, Anne Sidenius
This brief report discusses our experiences of exploring recruitment challenges in family-focused alcohol treatment and seeking possible solutions to these challenges. We used methods, inspired by Action Research and Systems Thinking, to engage and mobilize participants in two Danish rural municipalities. In the project, local participation from a broad range of stakeholders and a shared understanding of the local context gave rise to increased focus on and awareness of alcohol challenges in the community. We reflect on the importance of assessing whether a community is ready for change; the importance of integrating capacity-building and implementation from the beginning; the importance of engaging a wide range of stakeholders when creating a system map and the importance of recruiting community leaders to workshops, as implementation requires the engagement of persons who have the authority, capacity, and networks to lead systems changes across the community.
这篇简短的报告讨论了我们在以家庭为中心的酒精治疗中探索招募挑战的经验,并寻求应对这些挑战的可能解决方案。在行动研究和系统思考的启发下,我们采用了一些方法来吸引和动员丹麦两个农村城市的参与者。在该项目中,来自广泛利益攸关方的当地参与以及对当地情况的共同理解,使社区更加关注和认识到酒精问题带来的挑战。我们思考评估一个社区是否准备好迎接变革的重要性;从一开始就把能力建设和执行工作结合起来的重要性;在创建系统地图时,让广泛的涉众参与进来的重要性,以及招募社区领导参加研讨会的重要性,因为实施需要让拥有权威、能力和网络的人参与进来,以领导整个社区的系统变更。
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引用次数: 0
Shared Purpose: Leveraging a Community-Academic Partnership to Increase Local Environmental Health Awareness via Community Science. 共同目标:利用社区-学术伙伴关系,通过社区科学提高地方环境卫生意识。
Pub Date : 2022-01-01 DOI: 10.35844/001c.38475
Lisa J Martin, Vincent Hill, Curtis Maples, Theresa Baker, Shereen Elshaer, Melinda Butsch Kovacic

Environmental factors can lead to disease and health disparities when the places where people live, learn, work, play and pray are burdened by social inequities. Non-formal programs that explicitly connect local environmental exposures and human health could be of great value to communities at greatest risk. The purpose of this work was to co-create relevant and engaging education with youth and community stakeholders of all ages that more explicitly emphasizes the link between the local environment and community members' health through a hands-on community science experience. Our experiences helped strengthen our community-academic partnership and establish a route to create and tailor informal programming to meet local needs and engage people in community science with academic partners. We generated two distinctly different community science neighborhood audit tools designed to differently engage our community partners and inform community participants of their local environments and its role on their health. Through community meetings, we garnered critical insight from our stakeholders. While neither of the tools and accompanying data collected were deemed to be scientifically generalizable, our ongoing and future work has benefited from important lessons learned from their creation and sharing.

当人们生活、学习、工作、娱乐和祈祷的地方受到社会不平等的负担时,环境因素可导致疾病和健康差异。明确将当地环境暴露与人类健康联系起来的非正式方案,可能对面临最大风险的社区具有巨大价值。这项工作的目的是与所有年龄段的青年和社区利益相关者共同创建相关和参与的教育,通过实践社区科学经验,更明确地强调当地环境与社区成员健康之间的联系。我们的经验帮助加强了我们的社区-学术伙伴关系,并建立了创建和定制非正式规划的途径,以满足当地的需求,并使人们与学术伙伴一起参与社区科学。我们创建了两种截然不同的社区科学社区审计工具,旨在以不同的方式吸引我们的社区合作伙伴,并告知社区参与者他们的当地环境及其对他们健康的作用。通过社区会议,我们从利益相关者那里获得了重要的见解。虽然这两种工具和所收集的数据都不具有科学的普遍性,但我们正在进行的和未来的工作受益于从它们的创建和分享中吸取的重要经验教训。
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引用次数: 1
A Guide to Selecting Participatory Research Methods Based on Project and Partnership Goals. 根据项目和伙伴关系目标选择参与式研究方法指南》。
Pub Date : 2022-01-01 Epub Date: 2022-05-23 DOI: 10.35844/001c.32605
Stephanie R Duea, Emily B Zimmerman, Lisa M Vaughn, Sónia Dias, Janet Harris

Participatory research engages community stakeholders in the research process, from problem identification and developing the research question, to dissemination of results. There is increasing recognition in the field of health research that community-engaged methods can be used throughout the research process. The volume of guidance for engaging communities and conducting participatory research has grown steadily in the past 40+ years, in many countries and contexts. Further, some institutions now require stakeholder engagement in research as a condition of funding. Interest in collaborating in the research process is also growing among patients and the public. This article provides an overview for selecting participatory research methods based on project and partnerships goals.

参与式研究让社区利益相关者参与研究过程,从发现问题、提出研究问题到传播研究成果。健康研究领域越来越认识到,社区参与的方法可用于整个研究过程。过去 40 多年来,在许多国家和环境中,有关社区参与和开展参与式研究的指南数量稳步增长。此外,一些机构现在要求利益相关者参与研究,并将此作为提供资金的一个条件。患者和公众对在研究过程中开展合作的兴趣也与日俱增。本文概述了如何根据项目和合作目标选择参与式研究方法。
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引用次数: 0
Lessons Learned From Conducting Community-Based Research on HIV Prevention With Youth During COVID-19. 在2019冠状病毒病期间开展以社区为基础的青年预防艾滋病毒研究的经验教训。
Pub Date : 2022-01-01 Epub Date: 2022-10-24 DOI: 10.35844/001c.38385
Katherine LeMasters, Allysha Maragh-Bass, Marie Stoner, Nivedita Bhushan, John Mitchell, Linda Riggins, Alexandra Lightfoot

Mitigating HIV burden among Black youth requires true community engagement. This brief report identifies challenges, strategies, and lessons learned from transitioning our three-phased, community-engaged HIV prevention project with Black youth to a remote format during COVID-19. The project involved (1) building a community-academic partnership on youth sexual health, (2) participatory youth workshops, and (3) youth surveys and interviews about HIV prevention. Feedback from community-academic partnership, pile sorting themes, and preliminary qualitative analyses guided this report. Challenges included a disruption to in-person engagement while strategies included relying heavily on pre-existing partnerships to recruit youth for interviews. We learned that pre-existing community engagement was essential for completing phase three remotely. More education is needed to support Pre-Exposure Prophylaxis (PrEP) awareness for HIV prevention and there is a need to address structural barriers to healthcare engagement such as community violence and mental illness. Community-engaged HIV research focused on youth can adapt if anchored in community relationships. Future studies must work to more fully center youth's voices and address the structural issues that may inhibit them from engaging in HIV prevention.

减轻黑人青年的艾滋病毒负担需要真正的社区参与。这份简短的报告确定了在新冠肺炎期间将我们的三阶段、社区参与的黑人青年艾滋病毒预防项目转变为远程形式所面临的挑战、战略和经验教训。该项目涉及(1)建立关于青年性健康的社区学术伙伴关系,(2)参与性青年讲习班,以及(3)关于艾滋病毒预防的青年调查和访谈。来自社区学术合作伙伴关系、堆分类主题和初步定性分析的反馈指导了本报告。挑战包括中断面对面的参与,而战略包括严重依赖现有的合作伙伴关系来招募年轻人进行面试。我们了解到,预先存在的社区参与对于远程完成第三阶段至关重要。需要更多的教育来支持暴露前预防(PrEP)对艾滋病毒预防的认识,并且需要解决医疗参与的结构性障碍,如社区暴力和精神疾病。如果立足于社区关系,以青年为重点的社区参与的艾滋病毒研究可以适应。未来的研究必须致力于更充分地集中青年的声音,并解决可能阻碍他们参与艾滋病毒预防的结构性问题。
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引用次数: 1
Shooting for the Stars: Collaborative Design for Space Education 瞄准星空:空间教育的协同设计
Pub Date : 2021-11-17 DOI: 10.35844/001c.29671
L. Svedin, Jason M. Trew
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引用次数: 0
Participatory Microbiome Research With Hmong and Karen Communities: Lessons Learned 苗族和克伦族社区参与式微生物组研究:经验教训
Pub Date : 2021-11-17 DOI: 10.35844/001c.29669
Pajau Vangay, Nancy Yang, Shannon L Pergament, Mary Xiong, Bwei Paw, Rodolfo Batres, D. Knights, K. Culhane-Pera
In this brief report, we share lessons learned from the Immigrant Microbiome Project (IMP), a microbiome research study conducted in partnership with the Hmong and Karen communities in Minnesota. Members of the IMP academic-community research team and community advisory board reflected on the community-based participatory research (CBPR) approach used for the IMP project, which informed these lessons learned. The IMP illustrates how microbiome researchers can utilize CBPR, which can improve the validity of research projects, create respectful partnerships, build trust between community members and researchers, and ensure that research results are returned to the community as actions that can improve health.
在这份简短的报告中,我们分享了移民微生物组项目(IMP)的经验教训,这是一项与明尼苏达州苗族和克伦族社区合作进行的微生物组研究。IMP学术社区研究小组和社区咨询委员会的成员反思了IMP项目中使用的基于社区的参与性研究方法,该方法为这些经验教训提供了信息。IMP说明了微生物组研究人员如何利用CBPR,这可以提高研究项目的有效性,建立相互尊重的伙伴关系,在社区成员和研究人员之间建立信任,并确保研究结果作为改善健康的行动返回社区。
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引用次数: 1
Appreciative Inquiry and Boot Camp Translation: Combining Methods for Community Health Improvement 赞赏性探究与训练营翻译:社区健康改善的结合方法
Pub Date : 2021-11-17 DOI: 10.35844/001c.29490
J. Westfall, Linda Zittleman, Maret Felzien, Jodi Summers Holtrop, Tristen Hall, M. Fisher, M. Simpson, Griselda Pena-Jackson, Donald E. Nease, Jr.
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引用次数: 0
Melding Multiple Sources of Knowledge: Using Theory and Experiential Knowledge to Design a Community Health Intervention Study 融合多种知识来源:运用理论与经验知识设计社区卫生干预研究
Pub Date : 2021-11-17 DOI: 10.35844/001c.29013
Mina Silberberg, L. Muhlbaier, Elaine Hart-Brothers, Glenda M. Small, A. Bunce, Rupal Patel, Seronda Robinson, S. James
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引用次数: 0
期刊
Journal of participatory research methods
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