Browsing by Author "Nebeker, Camille"

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    Building the case for actionable ethics in digital health research supported by artificial intelligence
    (Springer Nature, 2019-07-17) Nebeker, Camille; Torous, John; Bartlett Ellis, Rebecca J.; School of Nursing
    The digital revolution is disrupting the ways in which health research is conducted, and subsequently, changing healthcare. Direct-to-consumer wellness products and mobile apps, pervasive sensor technologies and access to social network data offer exciting opportunities for researchers to passively observe and/or track patients ‘in the wild’ and 24/7. The volume of granular personal health data gathered using these technologies is unprecedented, and is increasingly leveraged to inform personalized health promotion and disease treatment interventions. The use of artificial intelligence in the health sector is also increasing. Although rich with potential, the digital health ecosystem presents new ethical challenges for those making decisions about the selection, testing, implementation and evaluation of technologies for use in healthcare. As the ‘Wild West’ of digital health research unfolds, it is important to recognize who is involved, and identify how each party can and should take responsibility to advance the ethical practices of this work. While not a comprehensive review, we describe the landscape, identify gaps to be addressed, and offer recommendations as to how stakeholders can and should take responsibility to advance socially responsible digital health research.
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    Development of a decision-making checklist tool to support technology selection in digital health research
    (Oxford University Press, 2020) Nebeker, Camille; Bartlett Ellis, Rebecca J.; Torous, John; School of Nursing
    Digital technologies offer researchers new approaches to test personalized and adaptive health interventions tailored to an individual. Yet, research leveraging technologies to capture personal health data involve technical and ethical consideration during the study design phase. No guidance exists to facilitate responsible digital technology selection for research purposes. A stakeholder-engaged and iterative approach was used to develop, test, and refine a checklist designed to aid researchers in selecting technologies for their research. First, stakeholders (n = 7) discussed and informed key decision-making domains to guide app/device selection derived from the American Psychiatric Association's framework that included safety, evidence, usability, and interoperability. We added "ethical principles" to the APA's hierarchical model and created a checklist that was used by a small group of behavioral scientists (n = 7). Findings revealed the "ethical principles" domains of respect, beneficence, and justice cut across each decision-making domains and the checklist questions/prompts were revised accordingly and can be found at thecore.ucsd.edu. The refined checklist contains four decision-making domains with prompts/questions and ethical principles embedded within the domains of privacy, risk/benefit, data management, and access/evidence. This checklist is the first step in leading the narrative of decision-making when selecting digital health technologies for research. Given the dynamic and rapidly evolving nature of digital health technology use in research, this tool will need to be further evaluated for usefulness in technology selection.
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    Lessons Learned: Beta-Testing the Digital Health Checklist for Researchers Prompts a Call to Action by Behavioral Scientists
    (JMIR, 2021-12-22) Bartlett Ellis, Rebecca; Wright, Julie; Soederberg Miller, Lisa; Jake-Schoffman, Danielle; Hekler, Eric B.; Goldstein, Carly M.; Arigo, Danielle; Nebeker, Camille; School of Nursing
    Digital technologies offer unique opportunities for health research. For example, Twitter posts can support public health surveillance to identify outbreaks (eg, influenza and COVID-19), and a wearable fitness tracker can provide real-time data collection to assess the effectiveness of a behavior change intervention. With these opportunities, it is necessary to consider the potential risks and benefits to research participants when using digital tools or strategies. Researchers need to be involved in the risk assessment process, as many tools in the marketplace (eg, wellness apps, fitness sensors) are underregulated. However, there is little guidance to assist researchers and institutional review boards in their evaluation of digital tools for research purposes. To address this gap, the Digital Health Checklist for Researchers (DHC-R) was developed as a decision support tool. A participatory research approach involving a group of behavioral scientists was used to inform DHC-R development. Scientists beta-tested the checklist by retrospectively evaluating the technologies they had chosen for use in their research. This paper describes the lessons learned because of their involvement in the beta-testing process and concludes with recommendations for how the DHC-R could be useful for a variety of digital health stakeholders. Recommendations focus on future research and policy development to support research ethics, including the development of best practices to advance safe and responsible digital health research.