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

描述(由申请人提供)：本提案的目的是推进匡威博士的长期目标，即制定一项独立研究计划，以开发、评估和传播旨在促进门诊环境中以患者为中心的护理并基于健康信息和通信技术的质量改进倡议。温博士是一名健康系统工程师，在心理社会医学和医学信息学方面接受过博士后培训。K01奖将允许她通过一个为期5年的职业发展计划来实现她的目标，该计划包括授课培训和有指导的研究。她的跨学科培训计划包括卫生服务研究领域的课程工作，重点是进行和设计随机对照试验、应用于临床研究的医学信息学以及人的因素/可用性工程，这将极大地加强和扩大她在这些领域的基础。她组建了一个跨越这些专业的指导和咨询团队，将在她的培训期间指导她，并将这些学科应用到她的研究中。导师和结构化课程的结合将为文博士提供必要的知识和技能，使她成为一名独立研究员，在临床环境中利用和整合以患者为中心的信息技术。在扩大和丰富她之前在交互式健康交流系统方面的研究经验的同时，拟议中的项目还将把文博士的研究扩展到一个新的维度，即患者可访问电子病历(PAMR)的应用。患者使用在线电子病历有可能逐步改善健康结果。在PAMR中提供的教育材料不仅将帮助患者了解他们的临床数据，而且还将通过使用综合的行为和健康沟通策略来支持他们，从而有助于实现最佳护理。乳腺癌是最常见的癌症，也是女性癌症死亡的第二大原因，占美国所有新确诊癌症的29%。乳腺癌的诊断常常会让人感到恐惧和痛苦。研究表明，乳腺癌患者报告说，他们的提供者往往无法理解他们的心理社会和沟通需求，以及他们对信息和技能的需求，以管理他们的疾病，并处理经常伴随其而来的重大生活变化和潜在的情感问题。为了弥合患者和医疗保健系统之间的鸿沟，拟议研究的主要目标是将来自电子病历的个人信息与有关乳腺癌治疗决策和护理管理的教育和支持内容整合在一个名为“MyHealthPortal”的患者门户网站中。在认知-社会健康信息处理模型、健康传播最佳实践、人的因素和可用性工程原则的指导下，研究目标是：1)为在综合癌症中心接受治疗的乳腺癌患者开发一个以患者为中心的基于网络的门户(MyHealthPortal)。用户将获得与他们的个人医疗记录相结合的工具，以了解他们的诊断、治疗，并通过以下资源管理他们的护理：健康信息、决策和情感支持以及临床沟通能力；2)进行试点随机对照试验研究，以评估MyHealth门户系统对早期乳腺癌患者的可行性和潜在影响。利用迭代开发过程，目标1将通过研究计划的四个阶段实现，以确保以用户为中心的设计和目标受众和保健提供者对门户网站的接受。第一阶段包括调查研究，以评估我们现有机构门户网站用户对当前门户网站的满意度，并确定需要改进的功能。第二阶段包括一项定性研究，以确定乳腺癌患者对PAMR整合门户的信息需求和偏好。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网站的态度和期望，该门户网站整合了共享的医疗记录和电子通信能力，将影响医患关系。第四阶段包括认知用户和可用性测试，以优化系统，最大限度地提高MyHealthPortal的有用性和患者满意度。Aim 2研究将在对120名乳腺癌患者(对照组/干预组60人)进行的先导性随机对照试验研究中评估门户系统的可行性，以检查MyHealth门户系统对患者结果的影响，包括：癌症相关痛苦、信息能力、应对自我效能、身体生活质量和医患沟通。还将评估干预参与者对MyHealth门户系统的满意度和使用情况。拟议的研究结果将提供初步数据，以支持R01提案，该提案将在一项更大的研究中检查MyHealthPortal系统的功效和成本效益。这项研究的结果和它将采用的开发过程不仅适用于乳腺癌人群，而且可以作为在其他癌症人群中开发和实施PAMR集成系统的模式。该奖项将为文博士提供丰富的经验，通过利用医疗信息技术进行严格的医疗保健系统质量改进研究，并促进她高级跨学科技能的发展。

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.