Publications by authors named "Camille Nebeker"

Objectives: Artificial intelligence (AI) proceeds through an iterative and evaluative process of development, use, and refinement which may be characterized as a lifecycle. Within this context, stakeholders can vary in their interests and perceptions of the ethical issues associated with this rapidly evolving technology in ways that can fail to identify and avert adverse outcomes. Identifying issues throughout the AI lifecycle in a systematic manner can facilitate better-informed ethical deliberation.

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Article Synopsis
  • Biomedical research is increasingly integrating artificial intelligence (AI) and machine learning (ML) to tackle complex challenges, necessitating a focus on ethical and explainable AI (XAI) due to the complexities of deep learning methods.
  • The NIH's Bridge2AI program is working on creating new flagship datasets aimed at enhancing AI/ML applications in biomedicine while establishing best practices, tools, standards, and criteria for assessing the data's AI readiness, including legal and ethical considerations.
  • The article outlines foundational criteria developed by the NIH Bridge2AI Standards Working Group to ensure the scientific rigor and ethical use of AI in biomedical research, emphasizing the need for ongoing adaptation as the field evolves.
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The research team, prospective participants, and written materials all influence the success of the informed consent process. As digital health research becomes more prevalent, new challenges for successful informed consent are introduced. This exploratory research utilized a human centered design process in which 19 people were enrolled to participate in one of four online focus-groups.

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The HEALthy Brain and Child Development (HBCD) Study, a multi-site prospective longitudinal cohort study, will examine human brain, cognitive, behavioral, social, and emotional development beginning prenatally and planned through early childhood. Wearable and remote sensing technologies have advanced data collection outside of laboratory settings to enable exploring, in more detail, the associations of early experiences with brain development and social and health outcomes. In the HBCD Study, the Novel Technology/Wearable Sensors Working Group (WG-NTW) identified two primary data types to be collected: infant activity (by measuring leg movements) and sleep (by measuring heart rate and leg movements).

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Precision medicine promises significant health benefits but faces challenges such as the need for complex data management and analytics, interdisciplinary collaboration, and education of researchers, healthcare professionals, and participants. Addressing these needs requires the integration of computational experts, engineers, designers, and healthcare professionals to develop user-friendly systems and shared terminologies. The widespread adoption of large language models (LLMs) like GPT-4 and Claude 3 highlights the importance of making complex data accessible to non-specialists.

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Article Synopsis
  • Digital therapeutics (DTx) offer innovative ways to improve health through tailored tools and algorithms but face complex development challenges due to their multifaceted nature.
  • There’s currently no comprehensive framework to guide the entire life cycle of DTx, from initial creation to long-term application, which hinders evidence production.
  • The proposed DTx real-world evidence (RWE) framework aims to address this gap by integrating real-world data into a structured, adaptive development process, beneficial for stakeholders in various sectors like healthcare and academia.
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Background: Wearable devices permit the continuous, unobtrusive collection of data from children in their natural environments and can transform our understanding of child development. Although the use of wearable devices has begun to emerge in research involving children, few studies have considered families' experiences and perspectives of participating in research of this kind.

Objective: Through a mixed methods approach, we assessed parents' and children's experiences of using a new wearable device in the home environment.

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Article Synopsis
  • The study explores the important ethical, legal, and social issues (ELSIs) that come up when using technology to manage personal health data.
  • A survey was given to members of the Society of Behavioral Medicine to find out what ELSI topics they need training in and what they are most interested in learning.
  • Most respondents had little formal ELSI training, and they wanted more education on engaging with participants and understanding data privacy, showing a need for better training opportunities.
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Background: As the COVID-19 pandemic continues, digital exposure notification systems are increasingly used to support traditional contact tracing and other preventive strategies. Likewise, a plethora of COVID-19 mobile applications have emerged. Objective: To characterize the global landscape of pandemic related mobile applications, including digital exposure notification and contact tracing tools.

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Purpose: Digital methods to augment traditional contact tracing approaches were developed and deployed globally during the COVID-19 pandemic. These "Exposure Notification (EN)" systems present new opportunities to support public health interventions. To date, there have been attempts to model the impact of such systems, yet no reports have explored the value of real-time system data for predictive epidemiological modeling.

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Background: Digitization (using novel digital tools and strategies) and consumerism (taking a consumer-oriented approach) are increasingly commonplace in clinical trials, but the implications of these changes are not well described.

Methods: We assembled a group of trial experts from academia, industry, non-profit, and government to discuss implications of this changing trial landscape and provide guidance.

Results: Digitization and consumerism can increase the volume and diversity of trial participants and expedite recruitment.

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Background: Smartphone use has increased dramatically and, in parallel, a market for mobile apps, including health apps, has emerged. The business model of targeted mobile app advertisements allows for the collection of personal and potentially sensitive information, often without user knowledge. Older adults comprise a rapidly growing demographic that is potentially vulnerable to exploitation by those accessing data collected via these apps.

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Background: Extensive research suggests that physical activity (PA) is important for brain and cognitive health and may help to delay or prevent Alzheimer's disease and related dementias. Most PA interventions designed to improve brain health in older adults have been conducted in laboratory, gym, or group settings that require extensive resources and travel to the study site or group sessions. Research is needed to develop novel interventions that leverage mobile health (mHealth) technologies to help older adults increase their engagement in PA in free-living environments, reducing participant burden and increasing generalizability of research findings.

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Objectives: Toward common methods for system monitoring and evaluation, we proposed a key performance indicator framework and discussed lessons learned while implementing a statewide exposure notification (EN) system in California during the COVID-19 epidemic.

Materials And Methods: California deployed the Google Apple Exposure Notification framework, branded CA Notify, on December 10, 2020, to supplement traditional COVID-19 contact tracing programs. For system evaluation, we defined 6 key performance indicators: adoption, retention, sharing of unique codes, identification of potential contacts, behavior change, and impact.

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Despite the potential value of graduate-level research ethics training, most Middle East countries, including Jordan, do not routinely offer formal research ethics training. In students enrolled in Jordanian master's level graduate program in pharmacy, the current study assessed: 1- differences in pre- and post-enrollment exposure to research ethics core themes, 2- whether this exposure was through a formal course or in an informal setting, and 3- student attitudes towards research ethics education and the need for integrating a dedicated research ethics course into pharmacy graduate programs. A 12-item on-line survey was developed by the authors and disseminated to a convenience sample of current and former master-level pharmacy students in Jordan.

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Research on opioid use in pregnancy is critically important to understand how the opioid epidemic has affected a generation of children, but also raises significant ethical and legal challenges. Embedded ethicists can help to fill the gaps in ethics oversight for such research, but further guidance is needed to help strike the balance between integration and independence.

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Purpose: To quantify and characterize social determinants of health (SDoH) data coverage using single-center electronic health records (EHRs) and the National Institutes of Health All of Us research program.

Design: Retrospective cohort study from June 2014 through June 2021.

Participants: Adults 18 years of age or older with a diagnosis of diabetic retinopathy, glaucoma, cataracts, or age-related macular degeneration.

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Background: With the aging of populations worldwide, early detection of cognitive impairments has become a research and clinical priority, particularly to enable preventive intervention for dementia. Automated analysis of the drawing process has been studied as a promising means for lightweight, self-administered cognitive assessment. However, this approach has not been sufficiently tested for its applicability across populations.

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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.

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Social isolation and loneliness (SI/L) are growing problems with serious health implications for older adults, especially in light of the COVID-19 pandemic. We examined transcripts from semi-structured interviews with 97 older adults (mean age 83 years) to identify linguistic features of SI/L. Natural Language Processing (NLP) methods were used to identify relevant interview segments (responses to specific questions), extract the type and number of social contacts and linguistic features such as sentiment, parts-of-speech, and syntactic complexity.

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As research involving human participants increasingly occurs with the aid of digital tools (e.g., mobile apps, wearable and remote pervasive sensors), the consent content and delivery process is changing.

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Healthy aging is critically important for several reasons, including economic impact and quality of life. As the population of older adults rapidly increases, identifying acceptable ways to promote healthy aging is a priority. Technologies that can facilitate health promotion and risk reduction behaviors may be a solution, but only if these mobile health (mHealth) tools can be used by the older adult population.

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Article Synopsis
  • Ethics review looks at whether research involving people is fair and safe, and an Ethics Review Committee (ERC) checks this.
  • There is a debate about if ERCs are still good at their job, especially with the rise of big data research.
  • The article points out both the ongoing issues with ERCs and new problems caused by big data, and suggests changes to make ERCs better at overseeing research.
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