James Lind Alliance (JLA)

  • 文章类型: Systematic Review
    背景:健康研究议程历来由研究人员领导;然而,他们的优先事项可能不一定与患者一致,护理人员和临床医生。研究优先级设置计划确定并优先考虑缺乏证据的主题。这在整形手术中尤其重要,缺乏高质量证据来明确回答许多常见临床问题的专业。研究优先事项直接研究活动和资金,因此,他们的选择过程必须具有代表性和透明度。本综述使用健康研究优先设置报告指南(REPRISE)评估了整形外科中的所有优先设置举措。
    方法:OVIDMedline,EMBASE,使用“研究优先级设置”和“整形和重建手术”的搜索词对CINAHL和JamesLindAlliance(JLA)存储库进行了搜索(开始-11/06/21)。进行了双作者筛选和数据提取,根据PRISMA。
    结果:在3899个重复引用中,17人被包括在内。大多数研究是在国家进行的(14/17),高收入(16/17)设置。与其他亚专科相比,更优先的设定举措侧重于烧伤(6/17)和手外科(4/17)。JLA(5/17)和定性(5/17)方法最多用于优先级排序,其次是德尔菲技术(3/17),其他调查(3/17)和混合方法(1/17)。少数包括患者(8/17)或多学科(8/17)利益相关者。很少报告实施研究重点(6/17)或衡量其影响(2/17)的战略。
    结论:低收入国家的利益相关者在整形外科的优先计划中代表性不足,尽管全球疾病负担。未来的研究应该招募更多的患者和多学科的利益相关者,达成有意义的共识。需要明确的实施战略,以最大限度地发挥影响。
    The health research agenda has historically been led by researchers; however, their priorities may not necessarily align with those of patients, caregivers and clinicians. Research priority setting initiatives identify and prioritise topics which lack evidence. This is particularly important in plastic surgery, a speciality lacking high-quality evidence to definitively answer many common clinical questions. Research priorities direct research activity and funding, so their selection process must be representative and transparent. This review appraised all priority setting initiatives in plastic surgery using the reporting guideline for priority setting of health research (REPRISE).
    OVID Medline, EMBASE, CINAHL and the James Lind Alliance (JLA) repository were searched (inception - 11/06/21) using search terms for \'research priority setting\' and \'plastic and reconstructive surgery\'. Dual-author screening and data extraction were conducted, according to PRISMA.
    Of 3899 de-duplicated citations, 17 were included. Most studies were conducted in national (14/17), high-income (16/17) settings. More priority setting initiatives focussed on burns (6/17) and hand surgery (4/17) than other subspecialties. The JLA (5/17) and qualitative (5/17) approaches were most used for prioritisation, followed by Delphi techniques (3/17), other surveys (3/17) and mixed methods (1/17). A minority included patient (8/17) or multi-disciplinary (8/17) stakeholders. Few reported strategies for implementing research priorities (6/17) or measuring their impact (2/17).
    Stakeholders from lower-income countries are underrepresented in priority setting initiatives for plastic surgery, despite the global burden of disease. Future studies should recruit more patient and multidisciplinary stakeholders, to achieve meaningful consensus. Clear implementation strategies are needed to maximise impact.
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  • 文章类型: Clinical Trial Protocol
    目标:AO脊柱再搜索目标和退行性脊髓型颈椎病的共同数据元素[RECODE-DCM]是一个多利益相关者的共识过程,旨在提高DCM的研究效率。它旨在确定十大研究不确定性,通过詹姆斯·林德联盟优先设定合作伙伴关系[PSP]。通过共识过程,研究问题的产生和排名。纳入患有脊髓型颈椎病[PwCM]的人是该过程的核心。我们假设通过词云生成来呈现PwCM体验将刺激其他关键利益相关者生成与PwCM需求更好地保持一致的研究问题。该协议概述了我们的计划,以评估这作为我们的PSP内的嵌套方法学研究。
    方法:一项在线调查要求PwCM提交并对与DCM方面相关的词语进行投票。审查后,对完善的单词列表进行了重新投票,以进行投票和单词提交。生成了字云,随后制定了AOSpineRECODE-DCMPSP调查的实施计划。
    结果:第一次调查后提交了79项条款。然后对87个精炼单词进行了重新轮询(又增加了39个单词)。在诊断类别下生成了四个词云,管理,长期影响,和其他。生成了1:1块随机化协议,以评估词云对PSP研究问题的数量和相关性的影响。
    结论:我们已经证明与PwCM一起为AO脊柱RECODE-DCM嵌套方法学研究生成工具是可行的。一旦测量阶段完成,我们将能够评估词云的影响。需要进一步的研究来评估任何影响在激发更具创造性的研究议程方面的价值。
    OBJECTIVE: AO Spine REsearch objectives and Common Data Elements for Degenerative Cervical Myelopathy [RECODE-DCM] is a multi-stakeholder consensus process aiming to promote research efficiency in DCM. It aims to establish the top 10 research uncertainties, through a James Lind Alliance Priority Setting Partnership [PSP]. Through a consensus process, research questions are generated and ranked. The inclusion of people with cervical myelopathy [PwCM] is central to the process. We hypothesized that presenting PwCM experience through word cloud generation would stimulate other key stakeholders to generate research questions better aligned with PwCM needs. This protocol outlines our plans to evaluate this as a nested methodological study within our PSP.
    METHODS: An online poll asked PwCM to submit and vote on words associated with aspects of DCM. After review, a refined word list was re-polled for voting and word submission. Word clouds were generated and an implementation plan for AO Spine RECODE-DCM PSP surveys was subsequently developed.
    RESULTS: Seventy-nine terms were submitted after the first poll. Eighty-seven refined words were then re-polled (which added a further 39 words). Four word clouds were generated under the categories of diagnosis, management, long-term effects, and other. A 1:1 block randomization protocol to assess word cloud impact on the number and relevance of PSP research questions was generated.
    CONCLUSIONS: We have shown it is feasible to work with PwCM to generate a tool for the AO Spine RECODE-DCM nested methodological study. Once the survey stage is completed, we will be able to evaluate the impact of the word clouds. Further research will be needed to assess the value of any impact in terms of stimulating a more creative research agenda.
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  • 文章类型: Journal Article
    方法:混合方法共识过程。
    目的:退行性脊髓型颈椎病(DCM)是一种常见的致残疾病,当周围脊柱结构的退行性改变导致机械应力损伤脊髓时。RECODE-DCM(退行性脊髓型颈椎病的重新搜索目标和通用数据元素)旨在通过使用多利益相关者合作伙伴关系来定义DCM研究重点,从而提高DCM领域内医疗保健资源的有效利用。为DCM临床研究开发最小数据集,并确认DCM的定义。
    方法:这需要多方利益相关者的伙伴关系和多个并行的共识发展过程。它将分为四个阶段。遵守COMET(有效性试验的核心结果)和JLA(詹姆斯·林德联盟)计划制定的指导。第1阶段将包括通知在线Delphi流程的初步工作(第2阶段)和共识会议(第3阶段)。根据协商一致会议的结论,将根据COSMIN(基于共识的健康测量仪器选择标准)标准对相关测量仪器进行汇总和评估,允许就如何衡量商定的数据点提出建议。第四阶段将监测和促进最终建议的使用。
    结论:RECODE-DCM开始首次建立索引项,最小数据集,和研究重点在一起。我们的目标是通过使用患者优先事项来告知未来DCM研究活动的范围,从而减少未来医疗保健资源的浪费。在DCM临床研究中一致使用标准数据集,审计,和临床监测将有助于对未来数据进行汇总分析,最终,对DCM有更深入的了解。
    METHODS: Mixed-method consensus process.
    OBJECTIVE: Degenerative cervical myelopathy (DCM) is a common and disabling condition that arises when mechanical stress damages the spinal cord as a result of degenerative changes in the surrounding spinal structures. RECODE-DCM (REsearch Objectives and Common Data Elements for Degenerative Cervical Myelopathy) aims to improve efficient use of health care resources within the field of DCM by using a multi-stakeholder partnership to define the DCM research priorities, to develop a minimum dataset for DCM clinical studies, and confirm a definition of DCM.
    METHODS: This requires a multi-stakeholder partnership and multiple parallel consensus development processes. It will be conducted via 4 phases, adhering to the guidance set out by the COMET (Core Outcomes in Effectiveness Trials) and JLA (James Lind Alliance) initiatives. Phase 1 will consist of preliminary work to inform online Delphi processes (Phase 2) and a consensus meeting (Phase 3). Following the findings of the consensus meeting, a synthesis of relevant measurement instruments will be compiled and assessed as per the COSMIN (Consensus-based Standards for the Selection of Health Measurement Instruments) criteria, to allow recommendations to be made on how to measure agreed data points. Phase 4 will monitor and promote the use of eventual recommendations.
    CONCLUSIONS: RECODE-DCM sets out to establish for the first time an index term, minimum dataset, and research priorities together. Our aim is to reduce waste of health care resources in the future by using patient priorities to inform the scope of future DCM research activities. The consistent use of a standard dataset in DCM clinical studies, audit, and clinical surveillance will facilitate pooled analysis of future data and, ultimately, a deeper understanding of DCM.
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