Petersen, Carolyn

AbstractThe 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.

Summary Objectives: To identify the different ethical issues that should be considered in participatory health through social media from different stakeholder perspectives (i.e., patients/service users, health professionals, health information technology (If) professionals, and policy makers) in any healthcare context. Methods: We implemented a two-round survey composed of open ended questions in the first round, aggregated into a list of ethical issues rated for importance by participants in the second round, to generate a ranked list of possible ethical issues in participatory health based on healthcare professionals’ and policy makers’ opinions on both their own point of view and their beliefs for other stakeholders’ perspectives. Results: Twenty-six individuals responded in the first round of the survey. Multiple ethical issues were identified for each perspective. Data privacy, data security, and digital literacy were common themes in all perspectives. Thirty-three individuals completed the second round of the survey. Data privacy and data security were ranked among the three most important ethical issues in all perspectives. Quality assurance was the most important issue from the healthcare professionals’ perspective and the second most important issue from the patients’ perspective. Data privacy was the most important consideration for patients/service users. Digital literacy was ranked as the fourth most important issue, except for policy makers’ perspective. Conclusions: Different stakeholders’ opinions fairly agreed that there are common ethical issues that should be considered across the four groups (patients, healthcare professionals, health IT professionals, policy makers) such as data privacy, security, and quality assurance.

AbstractThe active involvement of citizen scientists in setting research agendas, partnering with academic investigators to conduct research, analyzing and disseminating results, and implementing learnings from research can improve both processes and outcomes. Adopting a citizen science approach to the practice of precision medicine in clinical care and research will require healthcare providers, researchers, and institutions to address a number of technical, organizational, and citizen scientist collaboration issues. Some changes can be made with relative ease, while others will necessitate cultural shifts, redistribution of power, recommitment to shared goals, and improved communication. This perspective, based on a workshop held at the 2018 AMIA Annual Symposium, identifies current barriers and needed changes to facilitate broad adoption of a citizen science-based approach in healthcare.

AbstractAuthentic inclusion and engagement of behavioral health patients in their care delivery and in the process of scientific discovery are often challenged in the health care system. Consequently, there is a growing need to engage with and better serve the needs of behavioral health patients, particularly by leveraging health information technologies. In this work, we present rationale and strategies for improving patient engagement in this population in research and clinical care. First, we describe the potential for creating meaningful patient–investigator partnerships in behavioral health research to allow for cocreation of knowledge with patients. Second, in the context of behavioral health services, we explore the utility of sharing clinical notes to promote patients' agency in care delivery. Both lines of inquiry are centered in a Learning Health System model for behavioral health, where patients are agents in enhancing the therapeutic alliance and advancing the process of knowledge generation. Recommendations include genuinely democratizing the health care system and biomedical research enterprise through patient-centered information technologies such as patient portals. In research and technology development, we recommend seeking and tailoring behavioral health patients' involvement to their abilities, promoting patient input in data analysis plans, evaluating research and informatics initiatives for patients and clinicians, and sharing success and research findings with patients. In clinical practice, we recommend encouraging patients to read behavioral health notes on portals, engaging in proactive communication regarding note content, assessing outcomes including stress and anxiety in response to note content, and working with technology providers to support note-sharing governance and deployment.

AbstractData sharing agreements that clearly describe what individuals are agreeing to and what responsibilities data stewards will undertake are crucial for the establishment, maintenance, and flourishing of genomic datasets. To optimize genomic data resources, researchers, care professionals, and informaticians must regard system design, user objectives, and environmental considerations through users’ eyes, identifying fundamental values on which to build and potential barriers to success that must be avoided. Design of agreements that promote desired data sharing and protect valuable data resources as necessary begins with a review of user interests and concerns. Nontraditional approaches for informed consent (eg, abbreviated informed consent, electronic informed consent, and dynamic consent) can facilitate achievement of data donors’ privacy-related goals while making data available to researchers. Transparency in individual-researcher interactions, recognition and accommodation of cultural differences, and identification of shared needs and goals create a foundation for data sharing agreements that work over short and long terms.

AbstractHistorically, patients have held a passive role within healthcare, seeking consultation from and following the directions of providers and their care teams. However, changes in culture, education, and technology are making it possible for patients to proactively develop and implement technologies and approaches for health management and quality of life enhancement—to act as patient informaticians. This perspective reviews the societal shifts facilitating the evolution of patient informaticians as discrete actors within healthcare, describes the work of patient informaticians and how this work differs from that of other patient roles (eg, patient advocates), considers examples of patient informaticians in action, and defines patient informaticians’ position relative to the healthcare system.