Open Source Science: Transforming Chronic Illness Care

开源科学：改变慢性病护理

• 批准号: 7944176
• 负责人: Peter A Margolis
• 金额: $ 144.6万
• 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/7944176
• 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）： 慢性疾病导致太多人死亡并且花费太多。减轻这种负担是可能的，但在我们当前的医疗保健系统中，美国人接受了大约 50% 的指示护理，而且患者遵循医生命令的频率也差不多。如果有一种方法可以利用患者和临床医生的内在动机和集体智慧来创建一个更好的慢性病护理系统呢？如果这个系统允许患者和医生自由共享信息，协作解决重要问题，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，结果会怎样呢？改变慢性病护理的系统是可能的——我们打算通过设计、原型设计、优化和评估临床协作护理网络（C3N）来构建它。 我们的 C3N 是以协作创新网络 (COIN) 为蓝本的，1, 2 个网络团队由具有集体愿景的自我激励个人组成，通过网络通过共享想法、信息和工作来实现共同目标。然而，互联网让 COIN 充分发挥了潜力，维基百科、Linux 和万维网联盟本身就是突出的例子。然而，COIN 对于慢性病护理来说是新事物，虽然许多医生和患者使用网络搜索和查找健康信息，但现有的与健康相关的社交网络将患者与提供者分开，尽管患者与提供者的互动是慢性病护理的关键。 3 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。它挑战了占主导地位的慢性疾病护理系统或范式，该系统或范式将患者视为干预对象，围绕间歇性的一对一患者与医生互动构建护理，并假设基于知识的固有权力差异。我们提出的 C3N 通过让患者平等参与来挑战这一范式；通过异步一对一和一对多通信使交互连续；并通过拉平知识梯度。 我们的具体目标是设计、原型化、优化和评估患者-提供者 C3N，以改善儿科炎症性肠病 (IBD) 的临床实践、患者自我管理和疾病结果。检验这一假设很重要，因为当前系统内的变化可能只会带来增量改进。利用社交网络技术的新生力量，让患者和提供者参与共享协作，创建一个用于临床和自我管理行为改变的新系统，可以改变临床实践和新临床知识的产生方式。这种网络的成功范例可能会产生巨大影响：如果我们成功，C3N 有潜力改变美国各地的慢性疾病护理，挽救数十万人的生命和数十亿美元。 公共卫生相关性：当前的慢性病系统需要改变，以提供更好的护理。该项目将把患者和医生联合起来组成一个协作创新网络，设计、原型设计、优化和评估一个系统，以改善慢性病护理系统。如果成功，该项目将改善护理和自我管理，为慢性病患者带来更好的结果，并降低护理成本。