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在一个包含研究、商业和软件开发的数字健康敏捷项目中实施患者和公众参与所面临的挑战。

Challenges Implementing Patient and Public Involvement in a Digital Health Agile Project Which Includes Research, Business and Software Development.

机构信息

University of Oulu, Finland.

Trinity College Dublin, Ireland.

出版信息

Stud Health Technol Inform. 2024 Aug 22;316:310-314. doi: 10.3233/SHTI240406.

Abstract

Patient and public involvement (PPI) is a practice for involving future users in the design, development, and research of health technologies. There is increasing interest and demand for PPI, but little evidence based methodological support for integrating PPI in agile development processes. Multiple sclerosis (MS) is a chronic condition that severely impacts the lives of patients and requires active patient involvement. In this paper, we present the results of a case study, examining the adoption and integration of PPI into the development of a digital therapeutics solution for MS. The results highlight five critical phases that proved to be challenging: selecting patient participants, onboarding of patient participants and employees, framing tasks for patient participants, communication between patient participants and the rest of the development team, and reimbursements. The results are useful in creating evidence-based guidelines and methods for supporting the adoption of PPI.

摘要

患者和公众参与(PPI)是一种让未来用户参与健康技术设计、开发和研究的实践。人们对 PPI 的兴趣和需求日益增加,但在将 PPI 纳入敏捷开发过程方面,缺乏基于证据的方法支持。多发性硬化症(MS)是一种严重影响患者生活的慢性疾病,需要积极的患者参与。在本文中,我们介绍了一项案例研究的结果,该研究考察了将 PPI 纳入用于治疗多发性硬化症的数字治疗方案的开发过程中的采用和整合情况。研究结果突出了五个具有挑战性的关键阶段:选择患者参与者、患者参与者和员工的入职、为患者参与者设定任务、患者参与者与开发团队其他成员之间的沟通以及报销。这些结果对于制定支持 PPI 采用的循证指南和方法非常有用。

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