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利用社交媒体的力量:它如何帮助强直性脊柱炎研究?

Harnessing the power of social media: how can it help in axial spondyloarthritis research?

机构信息

Institute for Health Promotion and Disease Prevention Research, Department of Preventive Medicine.

Southern California Clinical and Translational Science Institute, Keck School of Medicine, University of Southern California, Los Angeles, California.

出版信息

Curr Opin Rheumatol. 2019 Jul;31(4):321-328. doi: 10.1097/BOR.0000000000000614.

Abstract

PURPOSE OF REVIEW

Axial spondyloarthritis (axSpA) is a chronic inflammatory rheumatic disease that is relatively unknown among the general public. Most patients with axSpA are young or middle-aged adults and more likely to use some social media. This review highlights trends in the application of social media and different ways in which these tools do already or may benefit clinical research, delivery of care, and education in rheumatology, particularly in the field of axSpA.

RECENT FINDINGS

This article discusses four areas in the biomedical field that social media has infused with novel ideas: (i) the use of patient-generated health data from social media to learn about their disease experience, (ii) delivering health education and interventions, (iii) recruiting study participants, and (iv) reform, transfer, and disseminate medical education. We conclude with promising studies in rheumatology that have incorporated social media and suggestions for future directions.

SUMMARY

Rheumatologists now have the opportunity to use social media and innovate on many aspects of their practice. We propose further exploration of multiple ways in which social media might help with the identification, diagnosis, education, and research study enrollment of axSpA patients. However, standardization in study design, reporting, and managing ethical and regulatory aspects will be required to take full advantage of this opportunity.

摘要

综述目的:中轴型脊柱关节炎(axSpA)是一种慢性炎症性风湿病,在普通大众中相对不为人知。大多数 axSpA 患者为中青年,更有可能使用某些社交媒体。本综述重点介绍了社交媒体的应用趋势,以及这些工具已经或可能在风湿病领域,特别是在 axSpA 领域的临床研究、护理提供和教育中带来益处的不同方式。

最新发现:本文讨论了社交媒体为以下四个生物医学领域带来新想法的方式:(i)利用来自社交媒体的患者生成的健康数据来了解他们的疾病体验,(ii)提供健康教育和干预措施,(iii)招募研究参与者,以及(iv)改革、转移和传播医学教育。最后,我们总结了一些已经纳入社交媒体的有前景的风湿病研究,并提出了未来的方向。

综述总结:风湿病学家现在有机会在其实践的许多方面利用社交媒体进行创新。我们建议进一步探索多种方式,利用社交媒体帮助识别、诊断、教育和招募 axSpA 患者参与研究。然而,为了充分利用这一机会,需要在研究设计、报告以及管理伦理和监管方面实现标准化。

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