以生活体验为中心的词汇云图可能会提高优先事项设定伙伴关系中收集研究不确定性的能力。

Lived experience-centred word clouds may improve research uncertainty gathering in priority setting partnerships.

机构信息

Division of Neurosurgery, Department of Clinical Neurosciences, University of Cambridge, Cambridge, UK.

Department of Clinical Neurosciences, North West Anglia NHS Foundation Trust and Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.

出版信息

BMC Med Res Methodol. 2023 Apr 22;23(1):100. doi: 10.1186/s12874-023-01897-6.

DOI:10.1186/s12874-023-01897-6

PMID:37087419

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10122197/

Abstract

INTRODUCTION

AO Spine RECODE-DCM was a multi-stakeholder priority setting partnership (PSP) to define the top ten research priorities for degenerative cervical myelopathy (DCM). Priorities were generated and iteratively refined using a series of surveys administered to surgeons, other healthcare professionals (oHCP) and people with DCM (PwDCM). The aim of this work was to utilise word clouds to enable the perspectives of people with the condition to be heard earlier in the PSP process than is traditionally the case. The objective was to evaluate the added value of word clouds in the process of defining research uncertainties in National Institute for Health Research (NIHR) James Lind Alliance (JLA) Priority Setting Partnerships.

METHODS

Patient-generated word clouds were created for the four survey subsections of the AO Spine RECODE-DCM PSP: diagnosis, treatment, long-term management and other issues. These were then evaluated as a nested methodological study. Word-clouds were created and iteratively refined by an online support group of people with DCM, before being curated by the RECODE-DCM management committee and expert healthcare professional representatives. The final word clouds were embedded within the surveys administered at random to 50% of participants. DCM research uncertainties suggested by participants were compared pre- and post-word cloud presentation.

RESULTS

A total of 215 (50.9%) participants were randomised to the word cloud stream, including 118 (55%) spinal surgeons, 52 (24%) PwDCM and 45 (21%) oHCP. Participants submitted 434 additional uncertainties after word cloud review: word count was lower and more uniform across each survey subsections compared to pre-word cloud uncertainties. Twenty-three (32%) of the final 74 PSP summary questions did not have a post-word cloud contribution and no summary question was formed exclusively on post-word cloud uncertainties. There were differences in mapping of pre- and post-word cloud uncertainties to summary questions, with greater mapping of post-word cloud uncertainties to the number 1 research question priority: raising awareness. Five of the final summary questions were more likely to map to the research uncertainties suggested by participants after having reviewed the word clouds.

CONCLUSIONS

Word clouds may increase the perspective of underrepresented stakeholders in the research question gathering stage of priority setting partnerships. This may help steer the process towards research questions that are of highest priority for people with the condition.

摘要

简介

AO 脊柱 RECODE-DCM 是一个多利益相关方优先事项设定伙伴关系（PSP），旨在确定退行性颈椎脊髓病（DCM）的十大研究优先事项。通过对外科医生、其他医疗保健专业人员（oHCP）和 DCM 患者（PwDCM）进行一系列调查，生成并迭代完善了这些优先事项。这项工作的目的是利用词云更早地听取患者对该疾病的意见，这在 PSP 过程中传统上是不可能的。其目标是评估词云在国家卫生研究院（NIHR）詹姆斯林德联盟（JLA）优先事项设定伙伴关系中定义研究不确定性过程中的附加值。

方法

为 AO 脊柱 RECODE-DCM PSP 的四个调查部分创建了患者生成的词云：诊断、治疗、长期管理和其他问题。然后将其作为嵌套方法学研究进行评估。通过 DCM 患者的在线支持小组创建和迭代完善词云，然后由 RECODE-DCM 管理委员会和专家医疗保健专业代表进行策划。最终的词云嵌入到随机分配给 50%参与者的调查中。在展示词云前后，比较参与者提出的 DCM 研究不确定性。

结果

共有 215 名（50.9%）参与者被随机分配到词云流，包括 118 名（55%）脊柱外科医生、52 名（24%）DCM 患者和 45 名（21%）oHCP。参与者在词云审查后提交了 434 条额外的不确定性：与词云前的不确定性相比，每个调查部分的字数更少且更均匀。74 个 PSP 总结问题中最终有 23 个（32%）没有词云后贡献，没有一个总结问题完全由词云后的不确定性形成。词云前后的不确定性与总结问题的映射存在差异，词云后不确定性与头号研究问题优先级：提高认识的映射更多。最终的 5 个总结问题更有可能映射到参与者审查词云后提出的研究问题。