焦点小组结构
包含HIV感染者对在NHS研究数据中共享HIV状态看法的焦点小组音频和转录数据。

基本信息
资源简介
焦点小组结构
【数据集背景】
本数据集源站标题为《Focus group structure.》。源站首次发布:2025-02-12。
【数据内容】
源站原始描述:Introduction People living with HIV (PLWH) now have near-normal life-expectancy, but still experience stigma, and HIV status is treated as sensitive health information. When UK healthcare patient data is curated into anonymised datasets for research, HIV diagnostic codes are stripped out. As PLWH age, we must research how HIV affects conditions of ageing, but cannot do so in current NHS research datasets. We aimed to elicit views on HIV status being shared in NHS datasets, and identify appropria…
【数据结构与技术规格】
文件数 1 个,合计 5.63 KB。Table 1.xls:application/vnd.ms-excel,5.63 KB。数据集 DOI:10.1371/journal.pone.0316848.t001。
【主题与分类】
源站学科分类:Medicine、Neuroscience、Biotechnology、Evolutionary Biology、Cancer、Science Policy。主题标签:still experience stigma、routinely collected health、p >&# 8220、england </ p、sensitive health information、health care improvements、age range 23、research areas envisaged、hiv diagnostic codes、hiv affects conditions。
【适用方向】
多模态数据适合跨模态对齐、融合建模与联合表征学习方向的研究。
【获取与许可】
源站页面:https://plos.figshare.com/articles/dataset/Focus_group_structure_/28401637
使用许可:CC BY 4.0(https://creativecommons.org/licenses/by/4.0/)。
规范引用:Ford, Elizabeth; Goddard, Katie; Smith, Michael; Vera, Jaime (2025). Focus group structure.. PLOS ONE. Dataset
下载信息
注册下载
需要注册 Kaggle 账号并登录后下载,适合需要跟踪下载记录和使用 API 的用户。
暂未开放公开下载
无需注册即可直接获取公开样本或文档,适合快速预览和评估数据集质量。
免登录有偿下载
公开数据集受托下载与技术交付服务。
提供高速下载与技术交付服务(收技术服务费,非数据销售)
暂未开放当前数据集主要来源为 Kaggle 公开托管,完整影像包建议通过原始链接或 Kaggle API 获取。
使用方式
数据集获取(Figshare)
- 源站标题:Focus group structure.
- DOI:10.1371/journal.pone.0316848.t001
- 发布日期:2025-02-12
- 文件数:1 个
- 文件总体积:5.63 KB
- 源站页面:https://plos.figshare.com/articles/dataset/Focus_group_structure_/28401637
命令行下载
curl -L -o "Table 1.xls" "https://ndownloader.figshare.com/files/52309693"
文件清单
Table 1.xls(5.63 KB)
文件总体积 5.63 KB(源站 API 实测)。
数据加载示例(图像类)
from PIL import Image
import glob, os
files = (glob.glob(os.path.join(path, "**", "*.png"), recursive=True)
+ glob.glob(os.path.join(path, "**", "*.jpg"), recursive=True)
+ glob.glob(os.path.join(path, "**", "*.tif"), recursive=True))
print("图像文件数:", len(files))
img = Image.open(files[0]); print("尺寸/模式:", img.size, img.mode)
# torchvision Dataset 方式:
# from torchvision import datasets
# ds = datasets.ImageFolder(path) # 要求 子目录=类别
目录组织与标注格式以源站说明和下载后实际文件为准。
数据说明
Introduction
People living with HIV (PLWH) now have near-normal life-expectancy, but still experience stigma, and HIV status is treated as sensitive health information. When UK healthcare patient data is curated into anonymised datasets for research, HIV diagnostic codes are stripped out. As PLWH age, we must research how HIV affects conditions of ageing, but cannot do so in current NHS research datasets. We aimed to elicit views on HIV status being shared in NHS datasets, and identify appropriate safeguards.
Methods
We conducted three focus groups with a convenience sample of PLWH recruited through HIV charities, presenting information on data governance, data-sharing, patient privacy, law, and research areas envisaged for HIV and ageing. Each focus group involved two presentations, a question session, and facilitated breakout discussion groups. Discussions were audio-recorded, transcribed and analysed thematically.
Results
37 PLWH (age range 23-58y) took part. The overarching theme was around trust, both the loss of trust experienced by participants due to previous negative or discriminatory experiences, and the need to slowly build trust in data-sharing initiatives. Further themes showed that participants were supportive of data being used for research and health care improvements, but needed a guarantee that their privacy would be protected. A loss of trust in systems and organisations using the data, suspicion of data users’ agendas, and worry about increased discrimination and stigmatisation made them cautious about data sharing. To rebuild trust participants wanted to see transparent security protocols, accountability for following these, and communication about data flows and uses, as well as awareness training about HIV, and clear involvement of PLWH as full stakeholders on project teams and decision-making panels.
Conclusions
PLWH were cautiously in favour of their data being shared for research into HIV, where this could be undertaken with high levels of security, and the close involvement of PLWH to set research agendas and avoid increased stigma.
许可
CC BY 4.0
引用
学术使用请引用 DOI 10.1371/journal.pone.0316848.t001(source: https://plos.figshare.com/articles/dataset/Focus_group_structure_/28401637)。
数据缺失?
依托陕西、四川两大基地,我们与超过十家三甲医院建立直接合作关系,覆盖合规授权、采集治理、专业标注、数据交付的全流程,为AI医疗团队提供即拿即用的高质量临床数据。
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