Laboratory for Medical Research and Consumer Involvement, Department of Public Health, Istituto di Ricerche Farmacologiche Mario Negri IRCCS, Milan, Italy.
Department of Management, Economics and Industrial Engineering, Politecnico of Milan, Milan, Italy.
JMIR Mhealth Uhealth. 2019 Jan 15;7(1):e10242. doi: 10.2196/10242.
Technological tools such as Web-based social networks, telemedicine, apps, or wearable devices are becoming more widespread in health care like elsewhere. Although patients are the main users, for example, to monitor symptoms and clinical parameters or to communicate with the doctor, their perspective is seldom analyzed, and to the best of our knowledge, no one has focused on the patients' health care advocacy associations' point of view.
The objective of this study was to assess patients' health care advocacy associations' opinions about the use, usefulness, obstacles, negative aspects, and impact of health apps and wearable devices through a Web-based survey.
We conducted a Web-based survey through SurveyMonkey over nearly 3 months. Participants were contacted via an email explaining the aims of the survey and providing a link to complete the Web-based questionnaire. All the 20 items were mandatory, and the anonymized data were collected automatically into a database. Only fully completed questionnaires were considered for analysis.
We contacted 1998 patients' health care advocacy associations; a total of 258 questionnaires were received back (response rate 12.91%), and 227 of the received questionnaires were fully completed (completion rate 88.0%). Informative apps, hospital apps for viewing medical reports or booking visits, and those for monitoring physical activity are the most used. They are considered especially useful to improve patients' engagement and compliance with treatment. Wearable devices to check physical activity and glycemia are the most widespread considering, again, their benefits in increasing patients' involvement and treatment compliance. For health apps and wearable devices, the main obstacles to their use are personal and technical reasons; the risk of overmedicalization is considered the most negative aspect of their constant use, while privacy and confidentiality of data are not rated a limitation. No statistical difference was found on stratifying the answers by responders' technological level (P=.30), age (P=.10), and the composition of the association's advisory board (P=.15).
According to responders, health apps and wearable devices are sufficiently known and used and are considered potential supports for greater involvement in health management. However, there are still obstacles to their adoption, and the developers need to work to make them more accessible and more useful. The involvement of patients and their associations in planning services and products based on these technologies (as well as others) would be desirable to overcome these barriers and boost awareness about privacy and the confidentiality of data.
在医疗保健领域，像其他领域一样，基于网络的社交网络、远程医疗、应用程序或可穿戴设备等技术工具越来越普及。尽管患者是主要使用者，例如监测症状和临床参数或与医生沟通，但他们的观点很少被分析，据我们所知，还没有人关注患者健康倡导协会的观点。
本研究旨在通过基于网络的调查评估患者健康倡导协会对健康应用程序和可穿戴设备的使用、有用性、障碍、负面影响和影响的看法。
我们通过 SurveyMonkey 进行了近 3 个月的基于网络的调查。通过电子邮件联系参与者，解释调查目的并提供完成基于网络问卷的链接。所有 20 个项目都是强制性的，匿名数据自动收集到数据库中。只有完整填写的问卷才会被分析。
我们联系了 1998 个患者健康倡导协会；共收到 258 份问卷（回应率 12.91%），其中 227 份收到的问卷填写完整（完成率 88.0%）。信息丰富的应用程序、用于查看医疗报告或预约就诊的医院应用程序以及用于监测身体活动的应用程序是使用最多的。它们被认为特别有助于提高患者对治疗的参与度和依从性。可穿戴设备用于检查身体活动和血糖，考虑到它们在增加患者参与度和治疗依从性方面的好处，使用最广泛。对于健康应用程序和可穿戴设备，使用的主要障碍是个人和技术原因；不断使用的最负面方面是过度医疗化的风险，而数据的隐私和保密性则不是限制因素。按回答者的技术水平（P=.30）、年龄（P=.10）和协会顾问委员会的组成（P=.15）对答案进行分层，没有发现统计学差异。
根据回答者的说法，健康应用程序和可穿戴设备已经足够知名和使用，并被认为是更积极参与健康管理的潜在支持。然而，在采用这些设备方面仍然存在障碍，开发人员需要努力使它们更易于访问和更有用。让患者及其协会参与规划基于这些技术（以及其他技术）的服务和产品，将有助于克服这些障碍，并提高对数据隐私和保密性的认识。
