MyHealthPortal: Using An Electronic Portal To Empower Patients With Breast Cancer

MyHealthPortal：使用电子门户为乳腺癌患者提供帮助

• 批准号: 8189738
• 负责人: Kuang-Yi Wen
• 金额: $ 13.97万
• 依托单位: FOX CHASE CANCER CENTER
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-08-01 至 2016-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8189738
• 关键词: MyHealthPortal; Using; Electronic; Portal; Empower

DESCRIPTION (provided by applicant): The objective of this proposal is to advance Dr. Kuang-Yi Wen's long-term goal of developing an independent research program to develop, evaluate and disseminate quality improvement initiatives that are designed for the promotion of patient-center care within ambulatory settings and based on use of health information and communication technology. Dr. Wen is a Health Systems Engineer with postdoctoral training in psychosocial medicine and medical informatics. The K01 award will allow her to achieve her goal through a 5-year career development program that includes didactic training and mentored research. Her interdisciplinary training plan, consisting of coursework across the fields of health services research with a focus on conduct and design of randomized controlled trials, medical informatics applied to clinical research, and human factors/usability engineering, will greatly strengthen and augment her grounding in these areas. She has assembled a mentorship and consulting team that spans these specialties which will guide her during her training and in the application of these disciplines to her research. The combination of mentoring and structured coursework will equip Dr. Wen with the knowledge and skills necessary for her development as an independent researcher in the area of utilizing and integrating patient-centered information technology into clinical settings. While expanding and enriching her prior research experience in Interactive Health Communication Systems, the proposed projects will also extend Dr. Wen's research into a new dimension, the application of patient accessible electronic medical records (PAMR). Patient use of online electronic medical records holds the potential to make incremental improvements in health outcomes. Educational materials that are made available within PAMR will not only help patients understand their clinical data, but also support them through use of integrated behavioral and health communication strategies in a comprehensive format that contributes to optimum care. Breast cancer, the most common cancer and the second leading cause of cancer deaths among women, accounts for 29% of all new cancer diagnoses in the United States. A diagnosis of breast cancer often evokes fear and distress. Studies show that breast cancer patients report that their providers often fail to understand their psychosocial and communication needs, and their need for information and skills to manage their illness and deal with the major life changes and potential emotional problems that often accompany it. To bridge the divide between patients and the healthcare system, the primary objective of the proposed research is to integrate within a patient portal called "MyHealthPortal," personal information from an electronic medical record with educational and support content about breast cancer treatment decision making and care management. Guided by the Cognitive-Social Health Information Processing Model, health communication best practices, and human factors and usability engineering principles, the research aims are: 1) develop a patient-centered web-based portal (MyHealthPortal) for breast cancer patients undergoing treatment in a Comprehensive Cancer Center. Users will be provided with tools that are integrated with their personal medical records to learn about their diagnosis, treatment, and to manage their care through resources such as: health information, decisional and emotional support, and clinical communication capability and 2) to conduct a pilot randomized controlled trial study to assess the feasibility and potential impact of the MyHealthPortal system with early-stage breast cancer patients. Using an iterative developmental process, aim 1 will be accomplished through four phases of the research plan to ensure a user-centered design and the acceptance of the portal among both the targeted audience and health care providers. Phase 1 includes survey research to assess our existing institutional portal users' satisfaction with the current portal and identify features in need of improvement. Phase 2 consists of a qualitative study to identify breast cancer patients' information needs and preference for a PAMR-integrated portal. Phase 3 includes a qualitative study to explore breast cancer clinicians' attitudes and expectations regarding the implementation of a patient portal which integrates shared medical records and e-communication capability that will impact on doctor-patient relationship. Phase 4 includes both cognitive user and usability testing for system refinement to maximize MyHealthPortal's usefulness and patient satisfaction. The Aim 2 study will evaluate the feasibility of the portal system in a pilot randomized controlled trial study with 120 breast cancer patients (n = 60 per control/intervention group) to examine the impact of the MyHealthPortal system on patient outcomes including: cancer-related distress, information competence, coping self-efficacy, physical quality of life, and doctor-patient communication. Satisfaction and usage with the MyHealthPortal system will also be evaluated among the intervention participants. The findings of the proposed research will provide preliminary data to support a R01 proposal that will examine the efficacy and cost-effectiveness of the MyHealthPortal system in a larger study. The findings of this research and the developmental process that it will employ will not only be applicable to the breast cancer population, but could also serve as a model for PAMR-integrated system development and implementation among other cancer populations. This award will provide Dr. Wen with substantial experience conducting rigorous health care system quality improvement research through the utilization of health information technology and facilitate her development of advanced interdisciplinary skills. PUBLIC HEALTH RELEVANCE: The internet is becoming an important source of information for patients with breast cancer, the most common cancer among women in the United States, but unfortunately, very few web-based educational interventions for such patients integrate personal information from an electronic medical record with educational and psychosocial support content about breast cancer treatment decision making and care management that is based on behavioral and health communication strategies. The proposed research will inform future efforts to employ patient-centered health information technology in the form of electronic medical records as a vehicle for delivery of theoretically-driven intervention content in an integrated portal format. The model of care and the process employed in the development of the integrated portal have the potential for wide-scale dissemination into the current care infrastructure.

描述（由申请人提供）：该提案的目的是促进Kuang-yi Wen博士的长期目标，即制定独立的研究计划，以开发，评估和传播质量改进计划，这些计划旨在促进卧床环境中的患者中心护理，并基于健康信息和通信技术的使用。 Wen博士是一名卫生系统工程师，接受了心理社会医学和医学信息学的博士后培训。 K01奖将使她能够通过一项为期5年的职业发展计划实现自己的目标，其中包括教学培训和指导研究。她的跨学科培训计划包括在卫生服务研究领域的课程工作，重点是进行随机对照试验的行为和设计，适用于临床研究的医学信息学以及人为因素/可用性工程，将极大地增强和增强她在这些领域的基础。她组建了一个指导和咨询团队，该团队涵盖了这些专业，这将指导她在培训期间以及将这些学科应用于她的研究中。指导和结构化课程的结合将使Wen博士在利用和集成以患者以患者为中心的信息技术为临床环境领域的独立研究人员发展所必需的知识和技能。在扩大和丰富她在交互式健康通信系统中的先前研究经验的同时，拟议的项目还将将Wen博士的研究扩展到新的维度，即患者可访问的电子病历（PAMR）的应用。患者使用在线电子病历有可能改善健康结果。 PAMR中提供的教育材料不仅可以帮助患者了解其临床数据，而且还通过以综合形式使用综合行为和健康交流策略来支持他们，从而有助于最佳护理。乳腺癌是女性最常见的癌症，也是癌症死亡的第二大原因，占美国所有新癌症诊断的29％。对乳腺癌的诊断通常会引起恐惧和困扰。研究表明，乳腺癌患者报告说，他们的提供者常常无法理解他们的社会心理和沟通需求，以及他们对管理疾病并应对其主要生活变化和经常伴随的潜在情感问题的信息和技能的需求。为了弥合患者与医疗保健系统之间的鸿沟，拟议研究的主要目的是在一个名为“ MyHealthportal”的患者门户网站内，来自电子病历中的个人信息，该信息具有有关乳腺癌治疗决策和护理管理的教育和支持内容。在认知社会健康信息处理模型，健康交流最佳实践以及人为因素和可用性工程原理的指导下，研究目的是：1）开发以患者为中心的基于患者的门户网站（MyHealthPortal），用于在综合癌症中心接受治疗的乳腺癌患者。将为用户提供与个人病历集成的工具，以了解他们的诊断，治疗和通过诸如：健康信息，决策和情感支持以及临床沟通能力以及2）的资源来管理其护理，以进行试验随机对照试验研究，以评估MyHealthPortal系统对早期乳腺癌患者的可行性和潜在影响。使用迭代发展过程，将通过研究计划的四个阶段来完成AIM 1，以确保以用户为中心的设计以及在目标受众和医疗保健提供者中接受门户网站。第1阶段包括调查研究，以评估我们现有的机构门户网站用户对当前门户的满意，并确定需要改进的功能。第2阶段由一项定性研究组成，旨在鉴定乳腺癌患者的信息需求和偏爱PAMR集成门户。第三阶段包括一项定性研究，以探索乳腺癌临床医生对实施患者门户的态度和期望，该病人将共享的医疗记录和电子通讯能力整合在一起，这将影响医生关系。第4阶段包括认知用户和系统改进的可用性测试，以最大程度地提高MyHealthPortal的实用性和患者满意度。 AIM 2研究将评估门户系统在一项试验的随机对照试验研究中的可行性，其中120名乳腺癌患者（每个对照组/干预组n = 60）检查MyHealthPortal System对患者预后的影响，包括：与癌症相关的困扰，信息能力，应对自我效能，应对自我效能感，身体质量，生活质量和医生的交流。在干预参与者中也将评估MyHealthPortal系统的满意度和使用。拟议研究的发现将提供初步数据，以支持R01提案，该建议将在一项更大的研究中检查MyHealthPortal系统的功效和成本效益。这项研究的发现及其将采用的发展过程不仅适用于乳腺癌的人群，而且还可以作为PAMR集成系统开发和实施的模型。该奖项将为Wen博士提供丰富的经验，通过利用健康信息技术进行严格的医疗保健系统质量改进研究，并促进她发展高级跨学科技能。 公共卫生相关性：互联网已成为乳腺癌患者的重要信息来源，乳腺癌是美国妇女中最常见的癌症，但不幸的是，对于此类患者的基于网络的教育干预措施很少，将电子病历中的个人信息与基于行为和健康交流策略基于乳腺癌治疗决策和护理的教育和心理社会支持内容的个人信息整合在一起。拟议的研究将为未来的努力提供以电子病历的形式采用以患者为中心的健康信息技术，作为以综合门户格式提供理论驱动的干预内容的工具。综合门户网站开发中采用的护理模型和过程具有大规模传播到当前护理基础设施中的潜力。