Feasibility and Value of a Website for Assessing Patient-Reported Outcomes

评估患者报告结果的网站的可行性和价值

• 批准号: 7661107
• 负责人: Claire F Snyder
• 金额: $ 21.65万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-08-15 至 2011-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7661107
• 关键词: Affect; Age; Ambulatory Care Facilities; Behavioral Sciences; Breast; Cancer Patient; Characteristics; Clinic; Clinic Visits; Clinical; Clinical Oncology; Clinical Trials; Communication; Comprehensive Cancer Center; Computerized Medical Record; Computerized Patient Records; Computers; Data; Data Collection; Enrollment; Feedback; Frequencies; Funding; Future; Goals; Grant; Health system; Healthcare Systems; Individual; Information Systems; Information Technology; Institute of Medicine (U.S.); Institution; Internet; Intervention; Length; Link; Malignant Neoplasms; Malignant neoplasm of prostate; Measures; Medical; Medical Oncologist; Modification; National Cancer Institute; National Cancer Policy Board; Operating System; Outcome; Outpatients; Patient Care; Patient Monitoring; Patient Outcomes Assessments; Patient observation; Patients; Perception; Personal Satisfaction; Phase; Pilot Projects; Quality of Care; Quality of life; Questionnaires; Race; Radiation Oncologist; Radiation Oncology; Randomized Controlled Trials; Reporting; Research; Research Personnel; Resources; Role; Running; Science; Site; Study Subject; Summary Reports; System; Technology; Testing; United States; Upper arm; Vertebral column; base; cancer care; clinical practice; data management; design; effectiveness research; experience; follow-up; health care quality; health information technology; health related quality of life; improved; innovation; member; multidisciplinary; novel; patient oriented; prototype; public health relevance; success; tumor; web site

DESCRIPTION (provided by applicant): Recent reports from the Institute of Medicine and National Cancer Policy Board have highlighted problems in the quality of care in the United States in general and for cancer care in particular. Innovations in information technology and electronic medical records may help improve the quality of care. The National Cancer Institute has called for multidisciplinary studies to improve our understanding of the role of technology and the Internet in delivering novel health-related interventions (PA-06-224). Through a previous grant, we organized a multidisciplinary network of experts to design a prototype website to (1) collect PRO data from cancer patients, (2) link the PRO data with the electronic medical record, and (3) facilitate use of PRO data in managing individual patients. The final deliverable for the initial grant was a prototype website ready for testing, and we are now ready to conduct the initial pilot-test. The overall goal of this project is to pilot-test the prototype website to assess its use, usefulness, and acceptability to clinicians and patients. We have assembled a multidisciplinary team to conduct this research. The study investigators include experts in cancer outcomes and effectiveness research and clinical oncology. A multidisciplinary Scientific Advisory Board drawn from the experts from the original grant will provide their perspectives in cancer outcomes and effectiveness research, clinical oncology, information technology, electronic medical records, behavioral science, decision science, and clinical trials. This pilot-test will take place at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins and will be conducted in two phases. In both phases, we will enroll breast and prostate cancer patients currently undergoing treatment. The clinicians managing these patients will also be study subjects and provide their feedback on the website's feasibility and value. Medical oncologists will participate in Phases 1 and 2, and radiation oncologists will participate in Phase 2 only to provide a new perspective. Phase 1 is a 5-month, single-arm initial pilot-test in approximately 50 patients. In Phase 1, there will be close monitoring of how patients and clinicians use the website in clinical practice and whether they find the website useful and acceptable. Based on the Phase 1 results, the web system will be modified as needed to improve its use, usefulness, and acceptability. In Phase 2, we will conduct an 8-month single-arm follow-up pilot test in 200 patients to observe how the revised web system operates under "real-world" conditions, with infrequent and random data collection. After Phase 2, we will further refine the web system and apply for additional funding to conduct a multi-center randomized controlled trial to evaluate the website's impact on patient care and outcomes. Public Health Relevance: This study is designed to pilot test a website that will collect information from cancer patients regarding their functioning and well-being and link that data with the electronic medical record for use in clinical encounters. If the website can demonstrate its feasibility and value in this study, future studies will evaluate its impact on patient care and outcomes. In the long run, this website is expected to improve the quality of cancer care.

描述（由申请人提供）：医学研究所和国家癌症政策委员会最近的报告强调了美国总体护理质量，特别是癌症护理的质量问题。信息技术和电子病历的创新可能有助于提高护理质量。美国国家癌症研究所呼吁进行多学科研究，以提高我们对技术和互联网在提供新型健康相关干预措施中的作用的理解 (PA-06-224)。通过之前的资助，我们组织了一个多学科专家网络，设计了一个原型网站，以 (1) 收集癌症患者的 PRO 数据，(2) 将 PRO 数据与电子病历链接起来，以及 (3) 促进 PRO 数据的使用在管理个别患者时。初始拨款的最终交付成果是一个可供测试的原型网站，我们现在已准备好进行初步试点测试。该项目的总体目标是对原型网站进行试点测试，以评估其使用、有用性以及临床医生和患者的可接受性。我们组建了一个多学科团队来进行这项研究。研究人员包括癌症结果和有效性研究以及临床肿瘤学方面的专家。由原始资助的专家组成的多学科科学顾问委员会将提供他们在癌症结果和有效性研究、临床肿瘤学、信息技术、电子病历、行为科学、决策科学和临床试验方面的观点。该试点测试将在约翰霍普金斯大学的悉尼金梅尔综合癌症中心进行，并将分两个阶段进行。在这两个阶段，我们将招募目前正在接受治疗的乳腺癌和前列腺癌患者。管理这些患者的临床医生也将成为研究对象，并对网站的可行性和价值提供反馈。医学肿瘤学家将参与第一阶段和第二阶段，放射肿瘤学家将参与第二阶段只是为了提供新的视角。第一阶段是在大约 50 名患者中进行为期 5 个月的单臂初步试点测试。在第一阶段，将密切监测患者和临床医生在临床实践中如何使用该网站，以及他们是否认为该网站有用和可接受。根据第一阶段的结果，网络系统将根据需要进行修改，以提高其使用、有用性和可接受性。在第二阶段，我们将对 200 名患者进行为期 8 个月的单臂随访试点测试，以观察修改后的网络系统在“现实世界”条件下如何运行，并收集不频繁和随机的数据。第二阶段之后，我们将进一步完善网络系统并申请额外资金来进行多中心随机对照试验，以评估网站对患者护理和结果的影响。公共健康相关性：本研究旨在试点测试一个网站，该网站将收集癌症患者的功能和健康信息，并将这些数据与电子病历链接起来，用于临床治疗。如果该网站能够在本研究中证明其可行性和价值，未来的研究将评估其对患者护理和结果的影响。从长远来看，该网站有望提高癌症护理的质量。