Ethical Dimensions of Clinical Data Sharing by U.S. Health Care Organizations for Purposes beyond Direct Patient Care: Interviews with Health Care Leaders.

Objectives:  This study aimed to (1) empirically investigate current practices and analyze ethical dimensions of clinical data sharing by health care organizations for uses other than treatment, payment, and operations; and (2) make recommendations to inform research and policy for health care organizations to protect patients' privacy and autonomy when sharing data with unrelated third parties.

Methods:  Semistructured interviews and surveys involving 24 informatics leaders from 22 U.S.

Selecting venues for AMIA events and conferences: guiding ethical principles.

A discussion and debate on the American Medical Informatics Association's (AMIA) Ethical, Legal, and Social Issues (ELSI) Working Group listserv in 2021 raised important issues related to a forthcoming conference in Texas. Texas had recently enacted a restrictive abortion law and restricted voting rights. Several AMIA members advocated for a boycott of the state and the scheduled conference.

Developments in Privacy and Data Ownership in Mobile Health Technologies, 2016-2019.

Objectives: To survey international regulatory frameworks that serve to protect privacy of personal data as a human right as well as to review the literature regarding privacy protections and data ownership in mobile health (mHealth) technologies between January 1, 2016 and June 1, 2019 in order to identify common themes.

Methods: We performed a review of relevant literature available in English published between January 1, 2016 and June 1, 2019 from databases including PubMed, Google Scholar, and Web of Science, as well as relevant legislative background material. Articles out of scope (as detailed below) were eliminated.

Ethics and informatics in the age of COVID-19: challenges and recommendations for public health organization and public policy.

The COVID-19 pandemic response in the United States has exposed significant gaps in information systems and processes that prevent timely clinical and public health decision-making. Specifically, the use of informatics to mitigate the spread of SARS-CoV-2, support COVID-19 care delivery, and accelerate knowledge discovery bring to the forefront issues of privacy, surveillance, limits of state powers, and interoperability between public health and clinical information systems. Using a consensus-building process, we critically analyze informatics-related ethical issues in light of the pandemic across 3 themes: (1) public health reporting and data sharing, (2) contact tracing and tracking, and (3) clinical scoring tools for critical care.

Health 'Big Data' Value, Benefit, and Control: The Patient eHealth Equity Gap.

Improvements in artificial intelligence and machine learning combined with the availability and exponential growth in individual and population health data offer opportunities for innovative patient/citizen-centered eHealth solutions. However, this confluence of social, technical, and economic interests can result in the privatization of control of patient data and contribute to widening inequity in access to healthcare. This paper explores these issues and advocates for a more equitable approach to advances in health big data for patients and citizens.

Managing Privacy and Data Sharing Through the Use of Health Care Information Fiduciaries.

Policy and regulation seldom keep up with advances in technology. Although data de-identification is seen as a key to protecting one's data, re-identification is often possible. Whether one's data is to be used for care, research, or commercial purposes, individuals are concerned about the use of their information.

How Stakeholder Assessment of E-Prescribing Can Help Determine Incentives to Facilitate Management of Care: A Delphi Study.

Background: Little research has been conducted on the quality, benefits, costs, and financial considerations associated with health information technology (HIT), particularly informatics technologies such as e-prescribing, from the perspective of all of its stakeholders.

Objectives: To (a) identify the stakeholders involved in e-prescribing and (b) identify and rank order the positives and negatives of e-prescribing from the perspective of stakeholders in order to create a framework for payers, integrated delivery systems, policymakers and legislators, and those who influence public policy to assist them in the development of incentives and payment mechanisms that result in the better management of care.

Methods: The Delphi method was used to enlist a panel of experts in e-prescribing, informatics, and/or HIT who have published in the field.

A Quality, Benefit, Cost, and Financial Framework for Health Information Technology, E-Prescribing: A Delphi Study.

Background: Little research has been conducted about the quality, benefits, costs, and financial considerations associated with health information technology (HIT), particularly informatics technologies, such as e-prescribing, from the perspective of all its stakeholders.

Objectives: This research effort sought to identify the stakeholders involved in e-prescribing and to identify and rank-order the positives and the negatives from the perspective of the stakeholders to create a framework to assist in the development of incentives and payment mechanisms which result in better managed care.

Methods: The Delphi method was employed by enlisting a panel of experts.

mHealth: Don't Forget All the Stakeholders in the Business Case.

Mobile health (mHealth) facilitates linking patient-generated data with electronic health records with clinical decision support systems. mHealth can transform health care, but to realize this potential it is important to identify the relevant stakeholders and how they might be affected. Such stakeholders include primary stakeholders, such as patients, families and caregivers, clinicians, health care facilities, researchers, payors and purchasers, employer, and miscellaneous secondary stakeholders, such as vendors, suppliers, distributors, and consultants, policy makers and legislators.

Legal and regulatory considerations associated with use of patient-generated health data from social media and mobile health (mHealth) devices.

Patient-generated health data are coming into broader use across the health care spectrum and hold great promise as a means to improve care and health outcomes. At the same time, rapid evolution in the social media and mobile health (mHealth) market has promoted an environment in which creation and transmission of personal health information is easy, quick, and appealing to patients. However, adoption of social media and mHealth by providers is hampered by legal and regulatory concerns with regard to data ownership and data use.

Sorrell v. IMS Health: issues and opportunities for informaticians.

In 2011, the US Supreme Court decided Sorrell v. IMS Health, Inc., a case that addressed the mining of large aggregated databases and the sale of prescriber data for marketing prescription drugs.

Haplotype affinities resolve a major component of goat (Capra hircus) MtDNA D-loop diversity and reveal specific features of the Sardinian stock.

Goat mtDNA haplogroup A is a poorly resolved lineage absorbing most of the overall diversity and is found in locations as distant as Eastern Asia and Southern Africa. Its phylogenetic dissection would cast light on an important portion of the spread of goat breeding. The aims of this work were 1) to provide an operational definition of meaningful mtDNA units within haplogroup A, 2) to investigate the mechanisms underlying the maintenance of diversity by considering the modes of selection operated by breeders and 3) to identify the peculiarities of Sardinian mtDNA types.

7 strategies for success in governing an ACO.

Strategies for success in governing an ACO include: Clearly articulating a patient-centered strategic plan that can serve as the basis for ACO management. Capitalizing upon each partner's strengths. Ensuring that capital and resources are allocated consistently with the ACO's goals and objectives.

Financial meltdown: key legal issues for healthcare organizations.

The economic downturn can lead to many types of legal issues, including: The need to negotiate forbearance agreements. Failure to pay vendors in a timely manner. Difficulty fulfilling charity care policies.

Analysis of candidate genes through a proteomics-based approach in primary cell lines from malignant melanomas and their metastases.

Proteomics provides a powerful approach for screening alterations in protein expression and post-translational modification associated with particular human diseases. In this study, the analysis of protein expression was focused on malignant melanoma in order to determine the candidate genes involved in tumour progression. The proteomes of cultured melanocytes and of cell lines from primary and metastatic lesions of one malignant melanoma patient were profiled using two-dimensional electrophoresis (2-DE) and mass spectrometry.

HIPAA privacy standards raise complex implementation issues.

In November 1999, under the mandate of the Health Insurance Portability and Accountability Act (HIPAA) of 1996, HHS issued proposed standards to protect the privacy of electronically transmitted personal health information. With publication of the final standards due soon, healthcare organizations must prepare to implement new processes and information systems to comply with the HIPAA requirements. The privacy standards are intended to accomplish three broad objectives: define the circumstances in which protected health information may be used and disclosed, establish certain individual rights regarding protected health information, and require that administrative safeguards be adopted to ensure the privacy of protected health information.

Paying specialists and subspecialists on a capitated basis.

Primary care physicians are the focal point of any capitated system. They are the gatekeepers to specialty and subspecialty physicians and to ancillary providers. However, many experts now believe that to truly align the incentives of all providers and to bring costs to the lowest level possible, specialty and subspecialty physicians also should be paid on a capitated basis.

Modifications of low density lipoprotein induced by the interaction with human plasma glycosaminoglycan-protein complexes.

Glycosaminoglycan (GAG)-protein complexes from human plasma were separated into low charge (LC-GP) and high charge (HC-GP) components. LC-GP and HC-GP differed with respect to GAG and protein composition and to molecular size. The in vitro interaction of both GAG-protein complexes with human LDL was investigated.

Special Medicare reimbursement and fraud and abuse considerations for management services organizations, medical foundations, and integrated delivery systems.

This chapter discusses certain Medicare reimbursement and fraud and abuse considerations for management services organizations (MSOs), medical foundations, and integrated delivery systems. It stresses the necessity of a business plan, the sources of capitalization that might be used in creating an integrated delivery system, and their effect on Medicare reimbursement. It also discusses related party principles and considerations and the Medicare "incident to" regulations.

Management services organizations.

This chapter defines a management services organization (MSO), and discusses the goals and objectives of hospitals and physicians in creating an MSO and the advantages and disadvantages of an MSO. It stresses the necessity of developing a business plan in the formation of an MSO and discusses organizational forms and MSO activities, such as managed care contracting, billing, information systems, utilization management and review, the provision of supplies, medical office space, equipment, staff, and turnkey arrangements. In addition, it discusses the structuring of MSO fees and a number of organizational structures for MSOs and legal issues affecting them.