BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) experience numerous serious physical health problems and comorbidities. Knowledge regarding the prevalence of these problems is needed in order to detect and treat them at an early stage. Data concerning these problems in individuals with SPIMD are limited. Therefore, the aim of this study was to determine the prevalence of reported physical health problems in adults with SPIMD through a review of medical records and care plans.METHOD: We conducted a cross-sectional study employing data obtained from medical and support records. A sample of adults with SPIMD was recruited in eight residential care settings. Physical health problems that had occurred during the previous 12 months or were chronic were recorded.RESULTS: The records of 99 participants were included. A wide range of physical health problems were found with a mean of 12 problems per person. Very high prevalence rates (>50%) were found for constipation, visual impairment, epilepsy, spasticity, deformations, incontinence and reflux.CONCLUSIONS: The results suggest that people with SPIMD simultaneously experience numerous, serious physical health problems. The reliance on reported problems may cause an underestimation of the prevalence of health problems with less visible signs and symptoms such as osteoporosis and thyroid dysfunction.
Abstract Background: With the growing shortage of nurses, labor-saving technology has become more important. In health care practice, however, the fit with innovations is not easy. The aim of this study is to analyze the development of a mobile input device for electronic medical records (MEMR), a potentially labor-saving application supported by nurses, that failed to meet the needs of nurses after development. Method: In a case study, we used an axiomatic design framework as an evaluation tool to visualize the mismatches between customer needs and the design parameters of the MEMR, and trace these mismatches back to (preliminary) decisions in the development process. We applied a mixed-method research design that consisted of analyzing of 118 external and internal files and working documents, 29 interviews and shorter inquiries, a user test, and an observation of use. By factoring and grouping the findings, we analyzed the relevant categories of mismatches. Results: The involvement of nurses during the development was extensive, but not all feedback was, or could not be, used effectively to improve the MEMR. The mismatches with the most impact were found to be: (1) suboptimal supportive technology, (2) limited functionality of the app and input device, and (3) disruption of nurses’ workflow. Most mismatches were known by the IT department when the MEMR was offered to the units as a product. Development of the MEMR came to a halt because of limited use. Conclusion: Choices for design parameters, made during the development of labor-saving technology for nurses, may conflict with the customer needs of nurses. Even though the causes of mismatches were mentioned by the IT department, the nurse managers acquired the MEMR based on the idea behind the app. The effects of the chosen design parameters should not only be compared to the customer needs, but also be assessed with nurses and nurse managers for the expected effect on the workflow.
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Background: The number of medical technologies used in home settings has increased substantially over the last 10-15 years. In order to manage their use and to guarantee quality and safety, data on usage trends and practical experiences are important. This paper presents a literature review on types, trends and experiences with the use of advanced medical technologies at home. Methods: The study focused on advanced medical technologies that are part of the technical nursing process and 'hands on' processes by nurses, excluding information technology such as domotica. The systematic review of literature was performed by searching the databases MEDLINE, Scopus and Cinahl. We included papers from 2000 to 2015 and selected articles containing empirical material. Results: The review identified 87 relevant articles, 62% was published in the period 2011-2015. Of the included studies, 45% considered devices for respiratory support, 39% devices for dialysis and 29% devices for oxygen therapy. Most research has been conducted on the topic 'user experiences' (36%), mainly regarding patients or informal caregivers. Results show that nurses have a key role in supporting patients and family caregivers in the process of homecare with advanced medical technologies and in providing information for, and as a member of multi-disciplinary teams. However, relatively low numbers of articles were found studying nurses perspective. Conclusions: Research on medical technologies used at home has increased considerably until 2015. Much is already known on topics, such as user experiences; safety, risks, incidents and complications; and design and technological development. We also identified a lack of research exploring the views of nurses with regard to medical technologies for homecare, such as user experiences of nurses with different technologies, training, instruction and education of nurses and human factors by nurses in risk management and patient safety.
The modern economy is largely data-driven and relies on the processing and sharing of data across organizations as a key contributor to its success. At the same time, the value, amount, and sensitivity of processed data is steadily increasing, making it a major target of cyber-attacks. A large fraction of the many reported data breaches happened in the healthcare sector, mostly affecting privacy-sensitive data such as medical records and other patient data. This puts data security technologies as a priority item on the agenda of many healthcare organizations, such as of the Dutch health insurance company Centraal Ziekenfonds (CZ). In particular when it comes to sharing data securely, practical data protection technologies are lacking as they mostly focus on securing the link between two organizations while being completely oblivious of what is happening with the data after sharing. For CZ, searchable encryption (SE) technologies that allow to share data in encrypted form, while enabling the private search on this encrypted data without the need to decrypt, are of particular interest. Unfortunately, existing efficient SE schemes completely leak the access pattern (= pattern of encrypted search results, e.g. identifiers of retrieved items) and the search pattern (= pattern of search queries, e.g. frequency of same queries), making them susceptible to leakage-abuse attacks that exploit this leakage to recover what has been queried for and/or (parts of) the shared data itself. The SHARE project will investigate ways to reduce the leakage in searchable encryption in order to mitigate the impact of leakage-abuse attacks while keeping the performance-level high enough for practical use. Concretely, we propose the construction of SE schemes that allow the leakage to be modeled as a statistic released on the queries and shared dataset in terms of ε-differential privacy, a well-established notion that informally says that, after observing the statistic, you learn approximately (determined by the ε-parameter) the same amount of information about an individual data item or query as if the item was not present in the dataset or the query has not been performed. Naturally, such an approach will produce false positives and negatives in the querying process, affecting the scheme’s performance. By calibrating the ε-parameter, we can achieve various leakage-performance trade-offs tailored to the needs of specific applications. SHARE will explore the idea of differentially-private leakage on different parts of SE with different search capabilities, starting with exact-keyword-match SE schemes with differentially-private leakage on the access pattern only, up to schemes with differentially-private leakage on the access and search pattern as well as on the shared dataset itself, allowing for more expressive query types like fuzzy match, range, or substring queries. SHARE comes with an attack lab in which we investigate existing and new types of leakage-abuse attacks to assess the mitigation-potential of our proposed combination of differential privacy with cryptographic guarantees in searchable encryption. To stimulate commercial exploitation of SHARE-results, our consortium partners CZ and TNO will take the lead on applying and evaluating our envisioned technologies in various healthcare use-cases.
The goal of UPIN is to develop and evaluate a scalable distributed system that enables users to cryptographically verify and easily control the paths through which their data travels through an inter-domain network like the Internet, both in terms of router-to-router hops as well as in terms of router attributes (e.g., their location, operator, security level, and manufacturer). UPIN will thus provide the solution to a very relevant and current problem, namely that it is becoming increasingly opaque for users on the Internet who processes their data (e.g., in terms of service providers their data passes through as well as what jurisdictions apply) and that they have no control over how it is being routed. This is a risk for people’s privacy (e.g., a malicious network compromising a user’s data) as well as for their safety (e.g., an untrusted network disrupting a remote surgery). Motivating examples in which (sensitive) user data typically travels across the Internet without user awareness or control are: - Internet of Things for consumers: sensors such as sleep trackers and light switches that collect information about a user’s physical environment and send it across the Internet to remote services for analysis. - Medical records: health care providers requiring medical information (e.g., health records of patients or remote surgery telemetry) to travel between medical institutions according to specified agreements. - Intelligent transport systems: communication plays a crucial role in future autonomous transportation systems, for instance to avoid freight drones colliding or to ensure smooth passing of trucks through busy urban areas. The UPIN project is novel in three ways: 1. UPIN gives users the ability to control and verify the path that their data takes through the network all the way to the destination endpoint, both in terms of hops and attributes of routers traversed. UPIN accomplishes this by adding and improving remote attestation techniques for on-path routers to existing path verification mechanisms, and by adopting and further developing in-packet path selection directives for control. 2. We develop and simulate data and control plane protocols and router extensions to include the UPIN system in inter-domain networking systems such as IP (e.g., using BGP and segment routing) and emerging systems such as SCION and RINA. 3. We evaluate the scalability and performance of the UPIN system using a multi-site testbed of open programmable P4 routers, which is necessary because UPIN requires novel packet processing functions in the data plane. We validate the system using the earlier motivating examples as use cases. The impact we target is: - Increased trust from users (individuals and organizations) in network services because they are able to verify how their data travels through the network to the destination endpoint and because the UPIN APIs enable novel applications that use these network functions. - More empowered users because they are able to control how their data travels through inter-domain networks, which increases self-determination, both at the level of individual users as well as at the societal level.
