Litchman Michelle L, Lewis Dana, Kelly Lesly A, Gee Perry M
1 College of Nursing, University of Utah, Salt Lake City, UT, USA.
2 Utah Diabetes and Endocrinology Center, Salt Lake City, UT, USA.
J Diabetes Sci Technol. 2019 Mar;13(2):164-170. doi: 10.1177/1932296818795705. Epub 2018 Sep 10.
Patient-driven innovation in diabetes management has resulted in a group of people with type 1 diabetes who choose to build and share knowledge around a do-it-yourself (DIY) open source artificial pancreas systems (OpenAPS). The purpose of this study was to examine Twitter data to understand how patients, caregivers, and care partners perceive OpenAPS, the personal and emotional ramifications of using OpenAPS, and the influence of OpenAPS on daily life.
Qualitative netnography was used to analyze #OpenAPS on Twitter over a two-year period.
There were 328 patients, caregivers, and care partners who generated 3347 tweets. One overarching theme, OpenAPS changes lives, and five subthemes emerged from the data: (1) OpenAPS use suggests self-reported A1C and glucose variability improvement, (2) OpenAPS improves sense of diabetes burden and quality of life, (3) OpenAPS is perceived as safe, (4) patient/caregiver-provider interaction related to OpenAPS, and (5) technology adaptation for user needs.
As users of a patient-driven technology, OpenAPS users are self-reporting improved A1C, day-to-day glucose levels, and quality of life. Safety features important to individuals with diabetes are perceived to be embedded into OpenAPS technology. Twitter analysis provides insight on a patient population driving an innovative solution to improve their quality of diabetes care.
糖尿病管理中由患者驱动的创新催生了一群1型糖尿病患者,他们选择围绕自制(DIY)开源人工胰腺系统(OpenAPS)构建并分享知识。本研究的目的是分析推特数据,以了解患者、护理人员和护理伙伴如何看待OpenAPS,使用OpenAPS带来的个人和情感影响,以及OpenAPS对日常生活的影响。
采用定性网络民族志方法,对推特上为期两年的#OpenAPS话题进行分析。
328名患者、护理人员和护理伙伴发布了3347条推文。数据中出现了一个总体主题“OpenAPS改变生活”以及五个子主题:(1)使用OpenAPS表明自我报告的糖化血红蛋白(A1C)和血糖变异性有所改善;(2)OpenAPS减轻了糖尿病负担,提高了生活质量;(3)OpenAPS被认为是安全的;(4)患者/护理人员与提供者之间与OpenAPS相关的互动;(5)根据用户需求进行技术适配。
作为患者驱动技术的使用者,OpenAPS用户自我报告糖化血红蛋白、日常血糖水平和生活质量均有所改善。糖尿病患者认为重要的安全功能已融入OpenAPS技术。推特分析为推动创新解决方案以改善糖尿病护理质量的患者群体提供了见解。