Open Source Science: Transforming Chronic Illness Care

开源科学：改变慢性病护理

• 批准号: 7765799
• 负责人: Peter A Margolis
• 金额: $ 147.16万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-30 至 2014-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7765799
• 关键词: American; Build-it; Caring; Childhood; Chronic Care; Chronic Disease; Clinical; Communication; Creativeness; Disease Outcome; Goals; Health; Healthcare; Healthcare Systems; Individual; Inflammatory Bowel Diseases; Intelligence; Internet; Knowledge; Lead; Life; Linux; Modeling; Motivation; Outcome; Parents; Patient Care; Patients; Physicians; Provider; Science; Self Management; Social Network; Structure; System; Technology; Testing; Vision; Work; base; behavior change; care systems; clinical practice; collaborative care; cost; design; improved; innovation; killings; open source; prototype; public health relevance; web-enabled

DESCRIPTION (provided by applicant): Chronic illness kills too many and costs too much. Reducing this burden is possible, yet within our current health care system, Americans receive about 50% of indicated care and patients follow doctors' orders about as often. What if there was a way to create a vastly better chronic illness care system by harnessing the inherent motivation and collective intelligence of patients and clinicians? What if this system allowed patients and physicians to share information freely, collaborate to solve important problems, and use their collective creativity and expertise to act in ways that improve health? A system for transforming chronic care is possible - we intend to build it by designing, prototyping, optimizing, and evaluating a clinical collaborative care network (C3N). Our C3N is modeled after collaborative innovation networks (COINs),1, 2 cyberteams of self motivated individuals with a collective vision, enabled by the Web to achieve a common goal by sharing ideas, information, and work. The internet, though, has allowed COINs to deliver their full potential, with Wikipedia, Linux, and the World Wide Web Consortium itself as prominent examples. COINs are, however, new to chronic illness care and, while many doctors and patients use the Web to search for and find health information, existing health-related social networks separate patients from providers, despite the fact that patient-provider interaction is key to chronic illness care.3 Joining patients (patients and parents) and providers (physicians and other clinicians) in a shared collaborative network is a radically innovative approach in health care. It challenges the dominant chronic illness care system or paradigm, which views patients as objects on which to intervene, structures care around episodic one-to-one patient-physician interactions, and assumes an inherent power differential based on knowledge. Our proposed C3N challenges the paradigm by engaging patients as co-equals; by making interaction continuous through asynchronous one-to-one and one-to-many communication; and by leveling the knowledge gradient. Our Specific Aim is to design, prototype, optimize, and evaluate a patient-provider C3N to improve clinical practice, patient self-management, and disease outcomes of pediatric inflammatory bowel disease (IBD). Testing this hypothesis is important because changes within the current system are likely to lead to only incremental improvement. Harnessing the nascent power of social networking technology to join patients and providers in a shared collaborative to create a new system for clinical and self-management behavior change can transform clinical practice and the way that new clinical knowledge is generated. A successful example of such a network could have vast impact: If we are successful, C3Ns have the potential to transform chronic illness care across the US, saving hundreds of thousands of lives and billions of dollars. PUBLIC HEALTH RELEVANCE: The current chronic illness system needs to be changed in order to deliver better care. This project will join patients and physicians together in a collaborative innovation network to design, prototype and optimize, and evaluate a system for improving the chronic illness care system. If successful, this project will lead to improved care and self- management, better outcomes for people with chronic illness, and lower costs of care.

描述（由申请人提供）：慢性病夺去了很多人的生命，花费也很大。减轻这种负担是有可能的，但在我们目前的医疗保健体系中，美国人只接受了大约50%的指示性护理，而患者也很少听从医生的命令。如果有一种方法可以通过利用患者和临床医生的内在动机和集体智慧来创造一个更好的慢性疾病护理系统呢？如果这个系统允许病人和医生自由地分享信息，合作解决重要问题，并利用他们的集体创造力和专业知识以改善健康的方式采取行动，那会怎么样？一个改变慢性护理的系统是可能的-我们打算通过设计，原型，优化和评估临床协作护理网络（C3N）来构建它。我们的C3N以协作创新网络（COINs）为模型，即1,2个具有集体愿景的自我激励个人组成的网络团队，通过Web实现通过分享想法、信息和工作来实现共同目标。然而，互联网让比特币充分发挥了其潜力，维基百科、Linux和万维网联盟本身就是突出的例子。然而，硬币对于慢性疾病护理来说还是一个新事物，尽管许多医生和患者使用网络搜索和查找健康信息，但现有的健康相关社交网络将患者与提供者分开，尽管患者与提供者之间的互动是慢性疾病护理的关键将患者（患者和家长）和提供者（医生和其他临床医生）加入共享协作网络是医疗保健领域的一种根本性创新方法。它挑战了主流的慢性病护理系统或范式，这些系统或范式将患者视为干预的对象，围绕偶发性的一对一医患互动构建护理，并假设基于知识的内在权力差异。我们提出的C3N通过让患者平等对待来挑战范式；通过异步的一对一和一对多通信使交互持续；通过平衡知识梯度。我们的具体目标是设计，原型，优化和评估患者-提供者C3N，以改善儿童炎症性肠病（IBD）的临床实践，患者自我管理和疾病结局。测试这一假设很重要，因为当前系统的变化可能只会带来渐进式的改进。利用社交网络技术的新生力量，将患者和提供者联合在一个共享的协作中，创建一个新的临床和自我管理行为改变系统，可以改变临床实践和新的临床知识产生的方式。这种网络的一个成功的例子可能会产生巨大的影响：如果我们成功，C3Ns有可能改变整个美国的慢性病护理，挽救数十万人的生命和数十亿美元。