The Learning Health Care System and Ethics: Challenges and Opportunities

2019 ◽  
pp. 158-172
Author(s):  
Stephanie Morain ◽  
Nancy E. Kass ◽  
Ruth R. Faden
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Ethical Issues ◽  
Care Delivery ◽  
Clinical Care ◽  
Knowledge Generation ◽  
Data Generation ◽  
Ethical Challenges ◽  
Learning Health Care System ◽  
Care System

This chapter introduces the concept of a learning health care system (LHCS) and discusses the ethical issues that arise within the LHCS context. The LHCS has gained attention as an organizational innovation to improve the quality and efficiency of health care. In an LHCS, knowledge generation is built into the ongoing practice of clinical care, and findings based on this knowledge are continuously fed back to improve care delivery. The goals of an LHCS are arguably consistent with the moral obligation of health systems to improve quality, safety, and justice in health. However, the LHCS model also presents potential ethical challenges. This article discusses challenges related to continuous data generation, including maintaining privacy and confidentiality; obligations related to data on cost and quality; transparency to patients and other stakeholders; and data interoperability. It also describes issues related to the continued appropriateness of the research-practice distinction and implications for ethical oversight.

scholarly journals The spectrum of ethical issues in a Learning Health Care System: a systematic qualitative review

2018 ◽  
Vol 30 (3) ◽  
pp. 161-168 ◽  
Author(s):  
Stuart McLennan ◽  
Hannes Kahrass ◽  
Susanne Wieschowski ◽  
Daniel Strech ◽  
Holger Langhof
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Ethical Issues ◽  
Qualitative Review ◽  
System A ◽  
Learning Health Care System ◽  
Care System

Governance of a Learning Health Care System for Oncology: Patient Recommendations

2020 ◽  
pp. OP.20.00454
Author(s):  
Rochelle D. Jones ◽  
Chris Krenz ◽  
Kent A. Griffith ◽  
Rebecca Spence ◽  
Angela R. Bradbury ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Ethical Issues ◽  
Medical Knowledge ◽  
Secondary Data ◽  
Governing Boards ◽  
Oncology Patient ◽  
For Profit ◽  
Learning Health Care System ◽  
Care System

PURPOSE: The learning health care system (LHS) was designed to enable real-time learning and research by harnessing data generated during patients’ clinical encounters. This novel approach begets ethical questions regarding the oversight of users and uses of patient data. Understanding patients’ perspectives is vitally important. MATERIALS AND METHODS: We conducted democratic deliberation sessions focused on CancerLinQ, a real-world LHS. Experts presented educational content, and then small group discussions were held to elicit viewpoints. The deliberations centered around whether policies should permit or deny certain users and uses of secondary data. De-identified transcripts of the discussions were examined by using thematic analysis. RESULTS: Analysis identified two thematic clusters: expectations and concerns, which seemed to inform LHS governance recommendations. Participants expected to benefit from the LHS through the advancement of medical knowledge, which they hoped would improve treatments and the quality of their care. They were concerned that profit-driven users might manipulate the data in ways that could burden or exploit patients, hinder medical decisions, or compromise patient-provider communication. It was recommended that restricted access, user fees, and penalties should be imposed to prevent users, especially for-profit entities, from misusing data. Another suggestion was that patients should be notified of potential ethical issues and included on diverse, unbiased governing boards. CONCLUSION: If patients are to trust and support LHS endeavors, their concerns about for-profit users must be addressed. The ethical implementation of such systems should consist of patient representation on governing boards, transparency, and strict oversight of for-profit users.

scholarly journals Canadian Perspectives on the Clinical Actionability of Neuroimaging in Disorders of Consciousness

2015 ◽  
Vol 42 (2) ◽  
pp. 96-105 ◽  
Author(s):  
Grace Lee ◽  
Adrian C. Byram ◽  
Adrian M. Owen ◽  
Urs Ribary ◽  
A. Jon Stoessl ◽  
...  
Keyword(s):  
Health Care ◽  
Brain Injury ◽  
Health Care System ◽  
Policy Development ◽  
Ethical Issues ◽  
Clinical Care ◽  
Acquired Brain Injury ◽  
Careful Consideration ◽  
Disorders Of Consciousness ◽  
Care System

AbstractBackground: Acquired brain injury is a critical public health and socioeconomic problem in Canada, leaving many patients in vegetative, minimally conscious, or locked-in states, unresponsive and unable to communicate. Recent advances in neuroimaging research have demonstrated residual consciousness in a few exemplary patients with acquired brain injury, suggesting potential misdiagnosis and changes in prognosis. Such progress, in parallel with research using multimodal brain imaging technologies in recent years, has promising implications for clinical translation, notwithstanding the many challenges that impact health care and policy development. This study explored the perspectives of Canadian professionals with expertise either in neuroimaging research, disorders of consciousness, or both, on the potential clinical applications and implications of imaging technology. Methods: Twenty-two professionals from designated communities of neuroimaging researchers, ethicists, lawyers, and practitioners participated in semistructured interviews. Data were analyzed for emergent themes. Results: The five most dominant themes were: (1) validation and calibration of the methods; (2) informed consent; (3) burdens on the health care system; (4) implications for the Canadian health care system; and (5) possibilities for improved prognosis. Conclusions: Movement of neuroimaging from research into clinical care for acquired brain injury will require careful consideration of legal and ethical issues alongside research reliability, responsible distribution of health care resources, and the interaction of technological capabilities with patient outcome.

scholarly journals Moving From Discovery to System-Wide Change: The Role of Research in a Learning Health Care System: Experience from Three Decades of Health Systems Research in the Veterans Health Administration

2017 ◽  
Vol 38 (1) ◽  
pp. 467-487 ◽  
Author(s):  
David Atkins ◽  
Amy M. Kilbourne ◽  
David Shulkin
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Clinical Care ◽  
Veterans Health Administration ◽  
Veterans Health ◽  
Health Administration ◽  
Scientific Enterprise ◽  
Systems Research ◽  
Learning Health Care System ◽  
Care System

The Veterans Health Administration is unique, functioning as an integrated health care system that provides care to more than six million veterans annually and as a home to an established scientific enterprise that conducts more than $1 billion of research each year. The presence of research, spanning the continuum from basic health services to translational research, has helped the Department of Veterans Affairs (VA) realize the potential of a learning health care system and has contributed to significant improvements in clinical quality over the past two decades. It has also illustrated distinct pathways by which research influences clinical care and policy and has provided lessons on challenges in translating research into practice on a national scale. These lessons are increasingly relevant to other health care systems, as the issues confronting the VA—the need to provide timely access, coordination of care, and consistent high quality across a diverse system—mirror those of the larger US health care system.

Toward Smarter Health and Well-Being: An Implicit Role for Networking and Information Technology

2011 ◽  
Vol 26 (2) ◽  
pp. 120-128 ◽  
Author(s):  
Erwin P Gianchandani
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Information Technologies ◽  
Care Delivery ◽  
Clinical Care ◽  
Chronically Ill ◽  
Well Being ◽  
Medical Practitioners ◽  
Malpractice Claims ◽  
Care System

The number of people afflicted with chronic illnesses such as obesity, cancer, and diabetes has soared in recent years, generating new kinds of disparate medical challenges. In turn, these challenges have resulted in skyrocketing costs, preventable deaths, and medical malpractice claims. For example, studies have found nearly half of all US patients receive inadequate care each year, over 2 million are harmed by hospital-acquired infections, and over 1 million suffer disabling complications during surgery – even though half of these are thought to be avoidable. These challenges have catalyzed the beginning of a transformation in care delivery, from a health-care system that focuses on disease to one that must look after patients – including individuals and communities. To provide proper treatment to those who are chronically ill, the health-care system has to support improved individuals’ health-related practices prior to the manifestation of disease; ensure that a range of practitioners can deliver quality clinical care during the onset of an illness; and facilitate patient-provider-family partnerships during post-disease wellness care. As we describe in this review, key advances in networking and information technologies – spanning patient monitoring, data visualization and decision making, robotics and computer vision for diagnosis and surgery, social networking for fostering community-based support systems, and so on – stand to drive forward these changes. Together with social scientists, systems engineers, medical practitioners, and computer scientists, information systems scholars can help alter the nature of care delivery well into the twenty-first century, ultimately contributing to a system that is much more safe, effective, reliable, and timely than it is today.

scholarly journals Innovation in a Learning Health Care System: Veteran-Directed Home- and Community-Based Services

2017 ◽  
Vol 65 (11) ◽  
pp. 2446-2451 ◽  
Author(s):  
Melissa M. Garrido ◽  
Richard M. Allman ◽  
Steven D. Pizer ◽  
James L. Rudolph ◽  
Kali S. Thomas ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care System ◽  
Community Based ◽  
Community Based Services ◽  
Learning Health Care System ◽  
Care System

Modern Western Science as a Standard for Traditional Chinese Medicine: A Critical Appraisal

2003 ◽  
Vol 31 (2) ◽  
pp. 213-221 ◽  
Author(s):  
Ruiping Fan
Keyword(s):  
Health Care ◽  
Chinese Medicine ◽  
Traditional Chinese Medicine ◽  
Health Care System ◽  
Care Delivery ◽  
World Health ◽  
Scientific Medicine ◽  
Integrative Health ◽  
Integrative Health Care ◽  
Care System

It is generally recognized that China, while attempting to develop modern scientific medicine in carrying out its national policy for modernization, has also made significant efforts to integrate traditional Chinese medicine into its health care system. For instance, the World Health Organization's first global strategy on traditional and alternative medicine (released in May 2002) lists China as one of only four of its member states to have attained an integrative health care system. However, medical integration can take many different forms and involve quite different health care standards. A health care standard is a set of mechanisms by which distinct diagnostic and therapeutic practices and products are validated or accredited for use in health care delivery. Traditional Chinese medicine and modern scientific medicine adopt different sets of such mechanisms and thereby engage different health care standards. Accordingly, in appraising the Chinese integrative health care system, it is important to investigate which health care standard has been appealed to.

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