Petersen, Carolyn

Objective: Social media is used in the context of healthcare, for example in interventions for promoting health. Since social media are easily accessible they have potential to promote health equity. This paper studies relevant factors impacting on health equity considered in social media interventions. Methods: We searched for literature to identify potential relevant factors impacting on health equity considered in social media interventions. We included studies that reported examples of health interventions using social media, focused on health equity, and analyzed health equity factors of social media. We identified Information about health equity factors and targeted groups. Results: We found 17 relevant articles. Factors impacting on health equity reported in the included papers were extracted and grouped into three categories: digital health literacy, digital ethics, and acceptability. Conclusions: Literature shows that it is likely that digital technologies will increase health inequities associated with increased age, lower level of educational attainment, and lower socio-economic status. To address this challenge development of social media interventions should consider participatory design principles, visualization, and theories of social sciences.

Abstract 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.

Abstract Recent advances in the science and technology of artificial intelligence (AI) and growing numbers of deployed AI systems in healthcare and other services have called attention to the need for ethical principles and governance. We define and provide a rationale for principles that should guide the commission, creation, implementation, maintenance, and retirement of AI systems as a foundation for governance throughout the lifecycle. Some principles are derived from the familiar requirements of practice and research in medicine and healthcare: beneficence, nonmaleficence, autonomy, and justice come first. A set of principles follow from the creation and engineering of AI systems: explainability of the technology in plain terms; interpretability, that is, plausible reasoning for decisions; fairness and absence of bias; dependability, including “safe failure”; provision of an audit trail for decisions; and active management of the knowledge base to remain up to date and sensitive to any changes in the environment. In organizational terms, the principles require benevolence—aiming to do good through the use of AI; transparency, ensuring that all assumptions and potential conflicts of interest are declared; and accountability, including active oversight of AI systems and management of any risks that may arise. Particular attention is drawn to the case of vulnerable populations, where extreme care must be exercised. Finally, the principles emphasize the need for user education at all levels of engagement with AI and for continuing research into AI and its biomedical and healthcare applications.

Abstract Background Individuals increasingly want to access, contribute to, and share their personal health information to improve outcomes, such as through shared decision-making (SDM) with their care teams. Health systems' growing capacity to use person-generated health data (PGHD) expands the opportunities for SDM. However, SDM not only lacks organizational and information infrastructure support but also is actively undermined, despite public interest in it. Objectives This work sought to identify challenges to individual–clinician SDM and policy changes needed to mitigate barriers to SDM. Methods Two multi-stakeholder group of consumers, patients, caregivers; health services researchers; and experts in health policy, informatics, social media, and user experience used a consensus process based on Bardach's policy analysis framework to identify barriers to SDM and develop recommendations to reduce these barriers. Results Technical, legal, organizational, cultural, and logistical obstacles make data sharing difficult, thereby undermining use of PGHD and realization of SDM. Stronger privacy, security, and ethical protections, including informed consent; promoting better consumer access to their data; and easier donation of personal data for research are the most crucial policy changes needed to facilitate an environment that supports SDM. Conclusion Data protection policy lags far behind the technical capacity for third parties to share and reuse electronic information without appropriate permissions, while individuals' right to access their own health information is often restricted unnecessarily, poorly understood, and poorly communicated. Sharing of personal information in a private, secure environment in which data are shared only with individuals' knowledge and consent can be achieved through policy changes.

Abstract Background As a major public health crisis, the novel coronavirus disease 2019 (COVID-19) pandemic demonstrates the urgent need for safe, effective, and evidence-based implementations of digital health. The urgency stems from the frequent tendency to focus attention on seemingly high promising digital health interventions despite being poorly validated in times of crisis. Aim In this paper, we describe a joint call for action to use and leverage evidence-based health informatics as the foundation for the COVID-19 response and public health interventions. Tangible examples are provided for how the working groups and special interest groups of the International Medical Informatics Association (IMIA) are helping to build an evidence-based response to this crisis. Methods Leaders of working and special interest groups of the IMIA, a total of 26 groups, were contacted via e-mail to provide a summary of the scientific-based efforts taken to combat COVID-19 pandemic and participate in the discussion toward the creation of this manuscript. A total of 13 groups participated in this manuscript. Results Various efforts were exerted by members of IMIA including (1) developing evidence-based guidelines for the design and deployment of digital health solutions during COVID-19; (2) surveying clinical informaticians internationally about key digital solutions deployed to combat COVID-19 and the challenges faced when implementing and using them; and (3) offering necessary resources for clinicians about the use of digital tools in clinical practice, education, and research during COVID-19. Discussion Rigor and evidence need to be taken into consideration when designing, implementing, and using digital tools to combat COVID-19 to avoid delays and unforeseen negative consequences. It is paramount to employ a multidisciplinary approach for the development and implementation of digital health tools that have been rapidly deployed in response to the pandemic bearing in mind human factors, ethics, data privacy, and the diversity of context at the local, national, and international levels. The training and capacity building of front-line workers is crucial and must be linked to a clear strategy for evaluation of ongoing experiences.

Abstract The development and implementation of clinical decision support (CDS) that trains itself and adapts its algorithms based on new data—here referred to as Adaptive CDS—present unique challenges and considerations. Although Adaptive CDS represents an expected progression from earlier work, the activities needed to appropriately manage and support the establishment and evolution of Adaptive CDS require new, coordinated initiatives and oversight that do not currently exist. In this AMIA position paper, the authors describe current and emerging challenges to the safe use of Adaptive CDS and lay out recommendations for the effective management and monitoring of Adaptive CDS.

Summary Objective: To summarize significant research contributions on ethics in medical informatics published in 2019. Methods: An extensive search using PubMed/Medline was conducted to identify the scientific contributions published in 2019 that address ethics issues in medical informatics. The selection process comprised three steps: 1) 15 candidate best papers were first selected by the two section editors; 2) external reviewers from internationally renowned research teams reviewed each candidate best paper; and 3) the final selection of three best papers was conducted by the editorial committee of the Yearbook. Results: The three selected best papers explore timely issues of concern to the community and demonstrate how ethics considerations influence applied informatics. Conclusion: With regard to ethics in informatics, data sharing and privacy remain primary areas of concern. Ethics issues related to the development and implementation of artificial intelligence is an emerging topic of interest.