Ariane Marelli, Ronen Rozenblum, Clara Bolster-Foucault, Alicia Via-Dufresne Ley, Noemie Maynard, Khush Amaria, Barb Galuppi, Sonya Strohm, Linda Nguyen, Claire Dawe-McCord, Connie Putterman, Adrienne H Kovacs, Jan Willem Gorter
{"title":"开发 MyREADY Transition BBD 移动应用程序（健康干预技术平台），以改善脑性残疾青少年的护理过渡：以用户为中心的设计方法。","authors":"Ariane Marelli, Ronen Rozenblum, Clara Bolster-Foucault, Alicia Via-Dufresne Ley, Noemie Maynard, Khush Amaria, Barb Galuppi, Sonya Strohm, Linda Nguyen, Claire Dawe-McCord, Connie Putterman, Adrienne H Kovacs, Jan Willem Gorter","doi":"10.2196/51606","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Transition from pediatric to adult health care varies and is resource intensive. Patient-centered health information technology (HIT) interventions are increasingly being developed in partnership with patients.</p><p><strong>Objective: </strong>This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness.</p><p><strong>Methods: </strong>The app was designed for patients aged 15 to 17 years with brain-based disabilities having the ability to use a mobile app. A multidisciplinary team, an industry partner, and a patient and family advisory council was assembled. We hypothesized that existing tools could be migrated into the app to address education, empowerment, and navigation. We used cognitive learning theory to support chapters targeting transition in care skill sets. We used the agile iterative methodology to engage stakeholders.</p><p><strong>Results: </strong>We developed a novel MyREADY Transition HIT platform. An electronic mentor supported cognitive learning with messaging, quizzes, rewards, and videos. We used gaming to guide navigation through a fictitious health care city. Adapting existing tools was achieved by the patient and family advisory council requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 months instead of our grant-approved 12 months, impacting the onset of the planned trial within the allotted budget.</p><p><strong>Conclusions: </strong>A novel patient-centered HIT platform to improve health care transition was successfully developed in partnership with patients and industry. Careful resource management was needed to achieve timely delivery of the end product, flagging the cautious planning required to deliver HIT tools in time for the much-needed trials informing their clinical application.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov NCT03852550; https://clinicaltrials.gov/study/NCT03852550.</p>","PeriodicalId":36223,"journal":{"name":"JMIR Pediatrics and Parenting","volume":null,"pages":null},"PeriodicalIF":2.1000,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11480690/pdf/","citationCount":"0","resultStr":"{\"title\":\"Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach.\",\"authors\":\"Ariane Marelli, Ronen Rozenblum, Clara Bolster-Foucault, Alicia Via-Dufresne Ley, Noemie Maynard, Khush Amaria, Barb Galuppi, Sonya Strohm, Linda Nguyen, Claire Dawe-McCord, Connie Putterman, Adrienne H Kovacs, Jan Willem Gorter\",\"doi\":\"10.2196/51606\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Transition from pediatric to adult health care varies and is resource intensive. Patient-centered health information technology (HIT) interventions are increasingly being developed in partnership with patients.</p><p><strong>Objective: </strong>This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness.</p><p><strong>Methods: </strong>The app was designed for patients aged 15 to 17 years with brain-based disabilities having the ability to use a mobile app. A multidisciplinary team, an industry partner, and a patient and family advisory council was assembled. We hypothesized that existing tools could be migrated into the app to address education, empowerment, and navigation. We used cognitive learning theory to support chapters targeting transition in care skill sets. We used the agile iterative methodology to engage stakeholders.</p><p><strong>Results: </strong>We developed a novel MyREADY Transition HIT platform. An electronic mentor supported cognitive learning with messaging, quizzes, rewards, and videos. We used gaming to guide navigation through a fictitious health care city. Adapting existing tools was achieved by the patient and family advisory council requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 months instead of our grant-approved 12 months, impacting the onset of the planned trial within the allotted budget.</p><p><strong>Conclusions: </strong>A novel patient-centered HIT platform to improve health care transition was successfully developed in partnership with patients and industry. Careful resource management was needed to achieve timely delivery of the end product, flagging the cautious planning required to deliver HIT tools in time for the much-needed trials informing their clinical application.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov NCT03852550; https://clinicaltrials.gov/study/NCT03852550.</p>\",\"PeriodicalId\":36223,\"journal\":{\"name\":\"JMIR Pediatrics and Parenting\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.1000,\"publicationDate\":\"2024-10-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11480690/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"JMIR Pediatrics and Parenting\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.2196/51606\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"PEDIATRICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"JMIR Pediatrics and Parenting","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.2196/51606","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"PEDIATRICS","Score":null,"Total":0}
引用次数: 0
摘要
背景：从儿科到成人医疗保健的过渡各不相同，而且需要大量资源。以患者为中心的医疗信息技术（HIT）干预措施正越来越多地与患者合作开发：本研究旨在为脑部残疾患者开发一种基于互联网的移动应用干预措施，以改善护理过渡准备情况：该应用程序专为 15 至 17 岁、有能力使用移动应用程序的脑瘫患者设计。我们组建了一个多学科团队、一个行业合作伙伴以及一个患者和家属咨询委员会。我们假设可以将现有工具移植到该应用程序中，以解决教育、赋权和导航问题。我们利用认知学习理论来支持针对护理技能过渡的章节。我们采用敏捷迭代法让利益相关者参与进来：我们开发了一个新颖的 MyREADY 过渡 HIT 平台。电子导师通过信息、测验、奖励和视频支持认知学习。我们利用游戏来引导用户浏览一个虚构的医疗保健城市。通过患者和家属咨询委员会的个性化要求，我们对现有工具进行了调整。我们的迭代设计需要耗时的后端技术管理。开发该平台耗时24个月，而不是我们批准的12个月，这影响了在预算范围内开始计划中的试验：结论：我们与患者和医疗行业合作，成功开发了一个以患者为中心的新型 HIT 平台，以改善医疗服务的过渡。为了及时交付最终产品，需要对资源进行精心管理，这也表明，要及时交付 HIT 工具，为急需的临床应用试验提供信息，就必须谨慎规划：试验注册：ClinicalTrials.gov NCT03852550；https://clinicaltrials.gov/study/NCT03852550。
Development of MyREADY Transition BBD Mobile App, a Health Intervention Technology Platform, to Improve Care Transition for Youth With Brain-Based Disabilities: User-Centered Design Approach.
Background: Transition from pediatric to adult health care varies and is resource intensive. Patient-centered health information technology (HIT) interventions are increasingly being developed in partnership with patients.
Objective: This study aims to develop an internet-based mobile app intervention for patients with brain-based disabilities to improve transition in care readiness.
Methods: The app was designed for patients aged 15 to 17 years with brain-based disabilities having the ability to use a mobile app. A multidisciplinary team, an industry partner, and a patient and family advisory council was assembled. We hypothesized that existing tools could be migrated into the app to address education, empowerment, and navigation. We used cognitive learning theory to support chapters targeting transition in care skill sets. We used the agile iterative methodology to engage stakeholders.
Results: We developed a novel MyREADY Transition HIT platform. An electronic mentor supported cognitive learning with messaging, quizzes, rewards, and videos. We used gaming to guide navigation through a fictitious health care city. Adapting existing tools was achieved by the patient and family advisory council requesting personalization. Our iterative design required time-consuming back-end technology management. Developing the platform took 24 months instead of our grant-approved 12 months, impacting the onset of the planned trial within the allotted budget.
Conclusions: A novel patient-centered HIT platform to improve health care transition was successfully developed in partnership with patients and industry. Careful resource management was needed to achieve timely delivery of the end product, flagging the cautious planning required to deliver HIT tools in time for the much-needed trials informing their clinical application.
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