Patient Perspectives on the Ethical Implementation of an Oncology Learning System

患者对肿瘤学学习系统道德实施的看法

• 批准号: 9975750
• 负责人: Reshma Jagsi
• 金额: $ 36.74万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-08-15 至 2022-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9975750
• 关键词: Age; American Society of Clinical Oncology; Area; Attitude; Awareness; Cancer Patient; Caring; Characteristics; Collaborations; Complex; Computerized Medical Record; Consent; Data; Development; Diagnosis; Disclosure; Disease; Education; Ensure; Environment; Ethics; Ethnic Origin; Etiology; Evolution; Exposure to; Gender; Genomics; Glean; Health; Health system; Healthcare; Healthcare Systems; Individual; Industry; Informed Consent; Institute of Medicine (U.S.); Intervention; Investigation; Judgment; Knowledge; Learning; Life; Malignant Neoplasms; Measures; Medical; Methods; Minority; Mission; Nonmaleficence; Notification; Oncology; Participant; Patients; Perception; Persons; Positioning Attribute; Prevention; Prevention strategy; Privacy; Process; Provider; Quality of Care; Race; Recommendation; Research; Site; Subgroup; Surveys; System; Testing; Time; Transcript; Trust; Work; cancer therapy; cancer type; clinical care; clinical practice; deliberative democracy; expectation; experience; improved; infancy; innovation; insight; neoplasm registry; patient subsets; precision medicine; satisfaction; social implication; survivorship; treatment strategy

Abstract: The development of learning health systems is causing radical transformation of the environment within which the NCI pursues its mission; understanding the ethical and social implications of these changes is of paramount importance. In rapid learning systems (RLS), routinely collected patient data drive the process of discovery, which in turn becomes a natural outgrowth of clinical care. As the Institute of Medicine has noted, such systems have substantial promise for improving the quality of care and research, and ultimately the value of health care. As such systems develop, the blurring of the current distinction between clinical practice, quality of care, and research necessitates careful consideration of ethical implications. As RLSs are in their infancy, it is critical to conduct research to generate informed and considered patient perceptions of the ethical implementation of such systems, particularly regarding ways to ensure respect for patient autonomy and privacy, including best approaches for informing participants and governance of data use, in order to realize the potential benefits of these systems. Therefore, we propose an innovative study that uses cutting edge methods of deliberative democracy to generate considered and informed opinions of cancer patients, leveraging a unique opportunity to evaluate patient experiences during the roll-out of a real-world RLS. Specifically, the American Society of Clinical Oncology (ASCO) has developed a real-world oncology RLS known as CancerLinQ. CancerLinQ is being implemented in 15 vanguard practices over the next year, and the approach to patient notification/consent and data governance in this system is actively evolving. We propose an empirical investigation with two distinct approaches and aims, in collaboration with ASCO and its vanguard practices. First, we will use a deliberative democracy approach to determine the range of informed and considered individual and group opinions and recommendations of cancer patients on the optimal approach for obtaining consent and appropriate uses of information routinely collected in the course of medical care as part of a RLS that seeks to improve quality and advance research. Second, following CancerLinQ roll-out, we will survey patients experiencing the real-world implementation of this RLS in order to evaluate their knowledge and perceptions of that system. Conducting the proposed work in parallel with the development of a real-world RLS provides an opportunity to directly inform the development and implementation of a national learning system that will ultimately impact tens of thousands of patients, and it also allows for the consideration of real- life rather than purely hypothetical scenarios in ways that increase the likelihood that these investigations will yield insights that are directly applicable in other settings. The findings will have substantial relevance to the research mission of the NCI, as oncology learning systems are fundamentally altering the context for research across the spectrum of cancer causation, diagnosis, prevention, treatment, and survivorship care.

摘要：学习型卫生系统的发展正在引起环境的根本性转变

项目成果

Workplace resources, mentorship, and burnout in early career physician-scientists: a cross sectional study in Japan

• DOI: 10.1186/s12909-020-02072-x
• 发表时间: 2020-06-03
• 期刊: BMC MEDICAL EDUCATION
• 影响因子: 3.6
• 作者: Perumalswami, Chithra R.;Takenoshita, Shinichi;Nomura, Kyoko
• 通讯作者: Nomura, Kyoko

Effect of Public Deliberation on Patient Attitudes Regarding Consent and Data Use in a Learning Health Care System for Oncology.

• DOI: 10.1200/jco.19.01693
• 发表时间: 2019-12-01
• 期刊: Journal of clinical oncology : official journal of the American Society of Clinical Oncology
• 作者: Jagsi, Reshma;Griffith, Kent A;Bradbury, Angela R
• 通讯作者: Bradbury, Angela R