Almost 40% of US adults provide informal caregiving, yet research gaps remain around what burdens affect informal caregivers. This study uses a novel social media site, Reddit, to mine and better understand what online communities focus on as their caregiving burdens. These forums were accessed using an application programming interface, a machine learning classifier was developed to remove low information posts, and topic modeling was applied to the corpus. An expert panel summarized the forums’ themes into ten categories. The largest theme extracted from Reddit’s forums discussed the personal emotional toll of being a caregiver. This was followed by logistic issues while caregiving and caring for parents who have cancer. Smaller themes included approaches to end-of-life care, physical equipment needs when caregiving, and the use of wearables or technology to help monitor care recipients. The platform often discusses caregiving for parents which may reflect the age of Reddit’s users. This study confirms that Reddit forums are used for caregivers to discuss the burdens associated with their role and the types of stress that can result from informal caregiving.

The University of Arkansas for Medical Sciences (UAMS), like many rural states, faces clinical and research obstacles to which digital innovation is seen as a promising solution. To implement digital technology, a mobile health interest group was established to lay the foundation for an enterprise-wide digital health innovation platform. To create a foundation, an interprofessional team was established, and a series of formal networking events was conducted. Three online digital health training models were developed, and a full-day regional conference was held featuring nationally recognized speakers and panel discussions with clinicians, researchers, and patient advocates involved in digital health programs at UAMS. Finally, an institution-wide survey exploring the interest in and knowledge of digital health technologies was distributed. The networking events averaged 35–45 attendees. About 100 individuals attended the regional conference with positive feedback from participants. To evaluate mHealth knowledge at the institution, a survey was completed by 257 UAMS clinicians, researchers, and staff. It revealed that there are opportunities to increase training, communication, and collaboration for digital health implementation. The inclusion of the mobile health working group in the newly formed Institute for Digital Health and Innovation provides a nexus for healthcare providers and researches to facilitate translational research.

Obtaining informed consent is a fundamental and ethical practice within human subjects' research. Informed consent forms (ICFs) include a large amount of information, much of which may be unfamiliar to research subjects, and the revised Common Rule resulted in several required additions to that language. As limited health literacy impacts many potential subjects, efforts should be made to optimize subjects' ability to read and understand ICFs. In this brief report, we describe an assessment of ICFs at an academic medical center to evaluate longitudinal changes in readability with the introduction and update of a plain language ICF template.

Background/Objective: Informed consent forms (ICFs) and practices vary widely across institutions. This project expands on previous work at the University of Arkansas for Medical Sciences (UAMS) Center for Health Literacy to develop a plain language ICF template. Our interdisciplinary team of researchers, comprised of biomedical informaticists, health literacy experts, and stakeholders in the Institutional Review Board (IRB) process, has developed the ICF Navigator, a novel tool to facilitate the creation of plain language ICFs that comply with all relevant regulatory requirements. Methods: Our team first developed requirements for the ICF Navigator tool. The tool was then implemented by a technical team of informaticists and software developers, in consultation with an informed consent legal expert. We developed and formalized a detailed knowledge map modeling regulatory requirements for ICFs, which drives workflows within the tool. Results: The ICF Navigator is a web-based tool that guides researchers through creating an ICF as they answer questions about their project. The navigator uses those responses to produce a clear and compliant ICF, displaying a real-time preview of the final form as content is added. Versioning and edits can be tracked to facilitate collaborative revisions by the research team and communication with the IRB. The navigator helps guide the creation of study-specific language, ensures compliance with regulatory requirements, and ensures that the resulting ICF is easy to read and understand. Conclusion: The ICF Navigator is an innovative, customizable, open-source software tool that helps researchers produce custom readable and compliant ICFs for research studies involving human subjects.