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彩色编码健康数据:加拿大南亚裔社区成员分享健康信息意愿的相关因素。

Color coded health data: factors related to willingness to share health information in South Asian community members in Canada.

机构信息

Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.

Department of Family Medicine, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.

出版信息

Int J Popul Data Sci. 2023 Jun 20;8(1):2134. doi: 10.23889/ijpds.v8i1.2134. eCollection 2023.

Abstract

INTRODUCTION

Data unavailability poses multiple challenges in many health fields, especially within ethnic subgroups in Canada, who may be hesitant to share their health data with researchers. Since health information availability is controlled by the participant, it is important to understand the willingness to share health information by an ethnic population to increase data availability within ethnocultural communities.

METHODS

We employed a qualitative descriptive approach to better understand willingness to share health information by South Asian participants and operated through a lens that considered the cultural and sociodemographic aspect of ethnocultural communities. A total of 22 in-depth interviews were conducted between March and July 2020.

RESULTS

The results of this study show that health researchers should aim to develop a mutually beneficial information-sharing partnership with communities, with an emphasis on the ethnocultural and socio-ecological aspects of health within populations.

CONCLUSION

The findings support the need for culturally sensitive and respectful engagement with the community, ethically sound research practices that make participants feel comfortable in sharing their information, and an easy sharing process to share health information feasibly.

摘要

简介

在许多健康领域,数据的不可用性带来了诸多挑战,尤其是在加拿大的少数族裔群体中,他们可能不愿意与研究人员分享自己的健康数据。由于健康信息的可用性由参与者控制,因此了解特定族裔群体分享健康信息的意愿对于增加族裔社区内的数据可用性非常重要。

方法

我们采用定性描述方法,深入了解南亚参与者分享健康信息的意愿,并通过考虑族裔社区的文化和社会人口学方面的视角来进行研究。总共在 2020 年 3 月至 7 月期间进行了 22 次深入访谈。

结果

本研究的结果表明,健康研究人员应致力于与社区建立互利的信息共享伙伴关系,重点关注人群中与族裔和社会生态相关的健康问题。

结论

这些发现支持与社区进行文化敏感和尊重的接触、采用道德上合理的研究实践,使参与者感到舒适并愿意分享信息,以及建立便捷的信息共享流程,以便能够切实地分享健康信息。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2806/10476700/2645e15cd304/ijpds-08-2134-g001.jpg

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