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. The discussion led the AMIA Board of Directors to request that the organization's Ethics Committee provide general guidance for principle-based venue selection. This document recommends overarching principles for the venue selection for future AMIA events and conferences. Discussions by the AMIA Board, the Ethics Committee, and the ELSI Working Group informed these recommendations, and this document on guiding principles was approved by the AMIA Board of Directors in April 2022.

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. We provide context and rationale for ethical considerations and recommendations that are actionable during the pandemic and conclude with recommendations calling for longer-term, broader change (beyond the pandemic) for public health organization and policy reform.

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. We categorized the remaining pool of articles and discrete themes were identified, specifically: concerns around data transmission and storage, including data ownership and the ability to re-identify previously de-identified data; issues with user consent (including the availability of appropriate privacy policies) and access control; and the changing culture and variable global attitudes toward privacy of health data. RESULTS: Recent literature demonstrates that the security of mHealth data storage and transmission remains of wide concern, and aggregated data that were previously considered "de-identified" have now been demonstrated to be re-identifiable. Consumer-informed consent may be lacking with regard to mHealth applications due to the absence of a privacy policy and/or to text that is too complex and lengthy for most users to comprehend. The literature surveyed emphasizes improved access control strategies. This survey also illustrates a wide variety of global user perceptions regarding health data privacy. CONCLUSION: The international regulatory framework that serves to protect privacy of personal data as a human right is diverse. Given the challenges legislators face to keep up with rapidly advancing technology, we introduce the concept of a "healthcare fiduciary" to serve the best interest of data subjects in the current environment.

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. The authors propose the concept of an information fiduciary for holders of data, describe how it might be applied in a health care context, and outline considerations to determine whether a holder of health care-related information should be regarded as an information fiduciary.

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. This panel was presented with the results of initial research and an online survey of questions that sought to prioritize the quality, benefit, cost, and financial effects of e-prescribing from the perspective of each stakeholder. Eleven experts completed the first survey, which contained a list of stakeholders and positives and negatives associated with e-prescribing. Nine of the 11 experts completed the second survey, and 7 experts completed the final survey. From the results of these 3 surveys, a framework was presented to 5 framework experts, who were representatives from payers, integrated delivery systems, policymakers and legislators, and those who influence public policy. These framework experts were interviewed regarding the usefulness of the framework from their perspectives. RESULTS: The experts added stakeholders and many positives and negatives to the initial list and rank ordered the positives and negatives of e-prescribing from the perspective of each stakeholder. The aggregate results were summarized by stakeholder category. The positives and negatives were categorized as health, finance, effort, time, management, or data concerns. The framework experts evaluated the framework and found it useful. CONCLUSIONS: Positives and negatives associated with e-prescribing in the areas of quality, benefits, costs, and financial considerations can be rank ordered from the perspective of each stakeholder. The experts agreed on some points but disagreed on others. For example, they agreed that the main negative of e-prescribing from the perspective of pharmacists and pharmacies was its implementation costs but differed on the importance of providing faster information transfer. A framework was created that could be successfully used by payers, integrated delivery systems, policymakers and legislators, and those who influence public policy for the development of incentives and payment mechanisms. DISCLOSURES: This research was supported by the National Library of Medicine of the National Institutes of Health under Award Number T15LM007088. The authors declare no conflicts of interest in the research. Study concept and design were contributed by DeMuro, Ash, Middleton, and Fletcher. DeMuro took the lead in data collection, along with Ash, and data interpretation was performed by DeMuro, Ash, Madison, Middleton, and Fletcher. The manuscript was written primarily by DeMuro, along with Ash and Middleton, and revised by DeMuro, Madison, and Ash, along with Middleton and Fletcher.

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. They were presented with the results of initial research in an online survey of questions which sought to prioritize the quality, benefit, cost, and financial effects of e-prescribing from the perspective of each stakeholder. From the results of this study, a framework was presented to framework experts. RESULTS: The experts added stakeholders and positives and negatives to the initial lists and rank-ordered the positives and negatives of e-prescribing from the perspective of each stakeholder. The aggregate results were summarized by category of stakeholder. The framework experts evaluated the framework. CONCLUSIONS: Positives and negatives can be rank-ordered from the perspective of each stakeholder. A useful framework was created.

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. The breadth and depth of the mHealth market make it possible for mHealth to have a considerable effect on people's health. However, many concerns exist, including privacy, data security, funding, and the lack of case studies demonstrating efficacy and cost-effectiveness. Many American and European initiatives to address these concerns are afoot.

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. Establishing effective leadership and engaging board members in governance. Developing legal and organizational structures that will best facilitate an integrated model. Employing the right technology in a way that best supports the ACO's mission.

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. The need for salary freezes or staff reductions. Healthcare financial leaders are advised to be familiar with debt/bond documents, track compliance, retain expert counsel, and keep management informed of key issues.