Background Recent shifts to telemedicine and remote patient monitoring demonstrate the potential for new technology to transform health systems; yet, methods to design for inclusion and resilience are lacking. Objective The aim of this study is to design and implement a participatory framework to produce effective health care solutions through co-design with diverse stakeholders. Methods We developed a design framework to cocreate solutions to locally prioritized health and communication problems focused on cancer care. The framework is premised on the framing and discovery of problems through community engagement and lead-user innovation with the hypothesis that diversity and inclusion in the co-design process generate more innovative and resilient solutions. Discovery, design, and development were implemented through structured phases with design studios at various locations in urban and rural Kentucky, including Appalachia, each building from prior work. In the final design studio, working prototypes were developed and tested. Outputs were assessed using the System Usability Scale as well as semistructured user feedback. Results We co-designed, developed, and tested a mobile app (myPath) and service model for distress surveillance and cancer care coordination following the LAUNCH (Linking and Amplifying User-Centered Networks through Connected Health) framework. The problem of awareness, navigation, and communication through cancer care was selected by the community after framing areas for opportunity based on significant geographic disparities in cancer and health burden resource and broadband access. The codeveloped digital myPath app showed the highest perceived combined usability (mean 81.9, SD 15.2) compared with the current gold standard of distress management for patients with cancer, the paper-based National Comprehensive Cancer Network Distress Thermometer (mean 74.2, SD 15.8). Testing of the System Usability Scale subscales showed that the myPath app had significantly better usability than the paper Distress Thermometer (t63=2.611; P=.01), whereas learnability did not differ between the instruments (t63=–0.311; P=.76). Notable differences by patient and provider scoring and feedback were found. Conclusions Participatory problem definition and community-based co-design, design-with methods, may produce more acceptable and effective solutions than traditional design-for approaches.
Electronic Health Records (EHRs) have improved many aspects of healthcare and allowed for easier patient management for medical providers. Blockchains have been proposed as a promising solution for supporting Electronic Health Records (EHRs), but have also been linked to scalability concerns about supporting real-world healthcare systems. This paper quantifies the scalability issues and bottlenecks related to current blockchains and puts into perspective the limitations blockchains have with supporting healthcare systems. Particularly we show that well known blockchains such as Bitcoin, Ethereum, and IOTA cannot support transactions of a large scale hospital system such as the University of Kentucky HealthCare system and leave over 7.5M unsealed transactions per day. We then discuss how bottlenecks of blockchains can be relieved with sidechains, enabling well-known blockchains to support even larger hospital systems of over 30M transactions per day. We then introduce the Patient-Healthchain architecture to provide future direction on how scaling blockchains for EHR systems with sidechains can be achieved.
Virtual private networking (VPN) has become an increasingly important component of a collaboration environment because it ensures private, authenticated communication among participants, using existing collaboration tools, where users are distributed across multiple institutions and can be mobile. The majority of current VPN solutions are based on a centralized VPN model, where all IP traffic is tunneled through a VPN gateway. Nonetheless, there are several use case scenarios that require a model where end-to-end VPN links are tunneled upon existing Internet infrastructure in a peer-to-peer (P2P) fashion, removing the bottleneck of a centralized VPN gateway. We propose a novel virtual network -TinCan -based on peerto-peer private network tunnels. It reuses existing standards and implementations of services for discovery notification (XMPP), reflection (STUN) and relaying (TURN), facilitating configuration. In this approach, trust relationships maintained by centralized (or federated) services are automatically mapped to TinCan links. In one use scenario, TinCan allows unstructured P2P overlays connecting trusted end-user devices -while only requiring VPN software on user devices and leveraging online social network (OSN) infrastructure already widely deployed. This paper describes the architecture and design of TinCan and presents an experimental evaluation of a prototype supporting Windows, Linux, and Android mobile devices. Results quantify the overhead introduced by the network virtualization layer, and the resource requirements imposed on services needed to bootstrap TinCan links.
The use of Internet connectivity for remote patient monitoring is often unsuitable for rural communities where Internet infrastructure is lacking, and power outages are frequent. This paper explores the rural connectivity problem in the context of remote patient monitoring and analyzes the feasibility of utilizing a delay tolerant network (DTN) architecture that leverages the social behaviors of rural community members to enable out-of-range monitoring of patients in rural communities without local transportation systems. The feasibility is characterized using delivery latency and delivery rate with the number of participants and the number of sources as variables. The architecture is evaluated for Owingsville, KY using U.S. Census Bureau, the National Cancer Institute's, and IPUMS ATUS sample data. The findings show that within a 24 hour window, there is an exponential relationship between the number of participants in the network and the delivery rate with a minimal delivery of 38.7%, a maximal delivery rate of a 100% and an overall average delivery rate of 89.8%.
Current remote patient monitoring (RPM) systems are fully reliant on the Internet. However, complete reliance on Internet connectivity is impractical in low resource and remote environments where modern infrastructure is often lacking, power outages are frequent, and/or network connectivity is sparse (e.g. rural communities, mountainous regions of Appalachia, American Indian reservations, developing countries, and natural disaster situations). This paper proposes supplementing intermittent Internet with opportunistic communication to leverage the social behaviors of patients, caregivers, and society members to facilitate out-of-range monitoring of patients via Bluetooth 5 during intermittent network connectivity. The architecture is evaluated using U.S. Census Bureau, the National Cancer Institute's, and IPUMS ATUS sample data for Owingsville, KY, and is compared against a delay tolerant RPM case that is completely disconnected from the Internet. The findings show that with only 0.30 rural population participation, the architecture can deliver 0.94 of non-emergency medical information with at least half of the information having a latency of ∼5 hours. In addition, the paper provides insights on how supplemented networks can be used in real-world rural RPM (RRPM) systems for different domain applications.
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