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Abstract：
BACKGROUND: This paper outlines the design, implementation, and usability study results of the patient empowerment process for chronic disease management, using Patient Reported Outcome Measurements and Shared Decision-Making Processes.
BACKGROUND: The ADLIFE project aims to develop innovative, digital health solutions to support personalized, integrated care for patients with severe long-term conditions such as Chronic Obstructive Pulmonary Disease, and/or Chronic Heart Failure. Successful long-term management of patients with chronic conditions requires active patient self-management and a proactive involvement of patients in their healthcare and treatment. This calls for a patient-provider partnership within an integrated system of collaborative care, supporting self-management, shared-decision making, collection of patient reported outcome measures, education, and follow-up.
METHODS: ADLIFE follows an outcome-based and patient-centered approach where PROMs represent an especially valuable tool to evaluate the outcomes of the care delivered. We have selected 11 standardized PROMs for evaluating the most recent patients\' clinical context, enabling the decision-making process, and personalized care planning. The ADLIFE project implements the \"SHARE approach\' for enabling shared decision-making via two digital platforms for healthcare professionals and patients. We have successfully integrated PROMs and shared decision-making processes into our digital toolbox, based on an international interoperability standard, namely HL7 FHIR. A usability study was conducted with 3 clinical sites with 20 users in total to gather feedback and to subsequently prioritize updates to the ADLIFE toolbox.
RESULTS: User satisfaction is measured in the QUIS7 questionnaire on a 9-point scale in the following aspects: overall reaction, screen, terminology and tool feedback, learning, multimedia, training material and system capabilities. With all the average scores above 6 in all categories, most respondents have a positive reaction to the ADLIFE PEP platform and find it easy to use. We have identified shortcomings and have prioritized updates to the platform before clinical pilot studies are initiated.
CONCLUSIONS: Having finalized design, implementation, and pre-deployment usability studies, and updated the tool based on further feedback, our patient empowerment mechanisms enabled via PROMs and shared decision-making processes are ready to be piloted in clinal settings. Clinical studies will be conducted based at six healthcare settings across Spain, UK, Germany, Denmark, and Israel.
BACKGROUND: The ADLIFE project aims to develop innovative, digital health solutions to support personalized, integrated care for patients with severe long-term conditions such as Chronic Obstructive Pulmonary Disease, and/or Chronic Heart Failure. Successful long-term management of patients with chronic conditions requires active patient self-management and a proactive involvement of patients in their healthcare and treatment. This calls for a patient-provider partnership within an integrated system of collaborative care, supporting self-management, shared-decision making, collection of patient reported outcome measures, education, and follow-up.
METHODS: ADLIFE follows an outcome-based and patient-centered approach where PROMs represent an especially valuable tool to evaluate the outcomes of the care delivered. We have selected 11 standardized PROMs for evaluating the most recent patients\' clinical context, enabling the decision-making process, and personalized care planning. The ADLIFE project implements the \"SHARE approach\' for enabling shared decision-making via two digital platforms for healthcare professionals and patients. We have successfully integrated PROMs and shared decision-making processes into our digital toolbox, based on an international interoperability standard, namely HL7 FHIR. A usability study was conducted with 3 clinical sites with 20 users in total to gather feedback and to subsequently prioritize updates to the ADLIFE toolbox.
RESULTS: User satisfaction is measured in the QUIS7 questionnaire on a 9-point scale in the following aspects: overall reaction, screen, terminology and tool feedback, learning, multimedia, training material and system capabilities. With all the average scores above 6 in all categories, most respondents have a positive reaction to the ADLIFE PEP platform and find it easy to use. We have identified shortcomings and have prioritized updates to the platform before clinical pilot studies are initiated.
CONCLUSIONS: Having finalized design, implementation, and pre-deployment usability studies, and updated the tool based on further feedback, our patient empowerment mechanisms enabled via PROMs and shared decision-making processes are ready to be piloted in clinal settings. Clinical studies will be conducted based at six healthcare settings across Spain, UK, Germany, Denmark, and Israel.
摘要：
背景：本文概述了设计，实施，以及慢性病管理患者授权过程的可用性研究结果，使用患者报告的结果测量和共享决策过程。
背景：ADLIFE项目旨在开发创新，支持个性化的数字健康解决方案，对慢性阻塞性肺疾病等长期严重疾病患者的综合护理，和/或慢性心力衰竭。慢性病患者的成功长期管理需要积极的患者自我管理和患者积极参与他们的医疗保健和治疗。这要求在一个综合的协作护理系统中建立患者与提供者的伙伴关系，支持自我管理，共同决策，收集患者报告的结果指标，教育,和后续行动。
方法：ADLIFE遵循基于结果和以患者为中心的方法，其中PROMs代表了评估所提供护理结果的特别有价值的工具。我们选择了11个标准化的PROM来评估最近的患者临床情况，启动决策过程，个性化护理规划。ADLIFE项目实施了“共享方法”，通过两个数字平台为医疗保健专业人员和患者提供共享决策。我们已经成功地将PROM和共享决策过程集成到我们的数字工具箱中，基于国际互操作性标准，即HL7FHIR。对3个临床站点进行了可用性研究，总共有20个用户，以收集反馈并随后对ADLIFE工具箱进行优先级更新。
结果：在QUIS7问卷中以9分量表在以下方面测量用户满意度：总体反应，屏幕,术语和工具反馈，学习,多媒体,培训材料和系统能力。所有类别的平均得分都在6以上，大多数受访者对ADLIFEPEP平台有积极的反应，并发现它易于使用。我们已经发现了缺陷，并在开始临床试点研究之前优先对平台进行更新。
结论：完成设计后，实施，和部署前可用性研究，并根据进一步的反馈更新了该工具，我们通过PROM和共享决策过程启用的患者赋权机制已准备好在临床环境中进行试验。临床研究将在西班牙的六个医疗机构进行，英国,德国,丹麦,和以色列。
背景：ADLIFE项目旨在开发创新，支持个性化的数字健康解决方案，对慢性阻塞性肺疾病等长期严重疾病患者的综合护理，和/或慢性心力衰竭。慢性病患者的成功长期管理需要积极的患者自我管理和患者积极参与他们的医疗保健和治疗。这要求在一个综合的协作护理系统中建立患者与提供者的伙伴关系，支持自我管理，共同决策，收集患者报告的结果指标，教育,和后续行动。
方法：ADLIFE遵循基于结果和以患者为中心的方法，其中PROMs代表了评估所提供护理结果的特别有价值的工具。我们选择了11个标准化的PROM来评估最近的患者临床情况，启动决策过程，个性化护理规划。ADLIFE项目实施了“共享方法”，通过两个数字平台为医疗保健专业人员和患者提供共享决策。我们已经成功地将PROM和共享决策过程集成到我们的数字工具箱中，基于国际互操作性标准，即HL7FHIR。对3个临床站点进行了可用性研究，总共有20个用户，以收集反馈并随后对ADLIFE工具箱进行优先级更新。
结果：在QUIS7问卷中以9分量表在以下方面测量用户满意度：总体反应，屏幕,术语和工具反馈，学习,多媒体,培训材料和系统能力。所有类别的平均得分都在6以上，大多数受访者对ADLIFEPEP平台有积极的反应，并发现它易于使用。我们已经发现了缺陷，并在开始临床试点研究之前优先对平台进行更新。
结论：完成设计后，实施，和部署前可用性研究，并根据进一步的反馈更新了该工具，我们通过PROM和共享决策过程启用的患者赋权机制已准备好在临床环境中进行试验。临床研究将在西班牙的六个医疗机构进行，英国,德国,丹麦,和以色列。
