This article reports research findings on how gaze-based assistive technology contributed to performance of daily activities for a group of children with severe physical impairments and without speech.
Several Nordic and Baltic countries are forerunners in the digitalization of patient ehealth services and have since long implemented psychiatric records as parts of the ehealth services. There are country-specific differences in what clinical information is offered to patients concerning their online patient accessible psychiatric records. This study explores national differences in Sweden, Norway, Finland, and Estonia in patient access to their psychiatric records. Data was collected through a socio-technical data collection template developed during a workshop series and then analyzed in a cross-country comparison focusing on items related to psychiatry records online. The results show that psychiatric records online are offered to patients in all four countries, and provide the same functionality and similar psychiatry information. Overall, the conclusion is that experiences of various functionalities should be scrutinized to promote transparency of psychiatric records as part of the national eHealth services to increase equality of care and patient empowerment.
"Journalen" is a patient accessible electronic health record (PAEHR) and the national eHealth service for Sweden's citizens to gain access to their EHR. The Swedish national eHealth organization Inera, responsible for Journalen, created an inbox to receive voluntary user feedback about Journalen in order to improve the service from the user perspective. Based on voluntary user feedback via email. This study explored patients' experiences of using the national eHealth service and identified pros and cons. A mixed method content analysis was performed. In total, 1084 emails from 2016-2017 have been analyzed. 9 categories were identified, the most frequent ones related to questions about why some information was not accessible (due to regional differencies), feedback (including only positive or negative comments as well as constructive improvement suggestions), and emails about errors that user found in their record. These data can be successfully used to continuously improve an already implemented eHealth service.
The openEHR foundation has developed an innovative design for interoperable and future-proof Electronic Health Record (EHR) systems based on a dual model approach with a stable reference information model complemented by archetypes for specific clinical purposes.A team from Sweden has implemented all the stable specifications in the Java programming language and donated the source code to the openEHR foundation. It was adopted as the openEHR Java Reference Implementation in March 2005 and released under open source licenses. This encourages early EHR implementation projects around the world and a number of groups have already started to use this code. The early Java implementation experience has also led to the publication of the openEHR Java Implementation Technology Specification. A number of design changes to the specifications and important minor corrections have been directly initiated by the implementation project over the last two years. The Java Implementation has been important for the validation and improvement of the openEHR design specifications and provides building blocks for future EHR systems.
The paper describes a mobile information system to collect patient information for anaesthesia quality control. In this system we use handheld computers, to collect patient data at the bedside with a daily synchronization of the data of the anaesthesiologist's handheld with the anaesthesia database center, later used for quality control analysis. Further, we design mobile clinical guidelines to be used on the same handhelds.
Patient accessible electronic health records (PAEHRs) have been proposed as a means to improve patient safety and documentation quality, as patients become an additional source to detect mistakes in the records. In pediatric care, healthcare professionals (HCP) have noted a benefit of parent proxy users correcting errors in their child's records. However, the potential of adolescents has so far been overlooked, despite reports of reading records to ensure accuracy. The present study examines errors and omissions identified by adolescents, and whether patients reported following up with HCPs. Survey data was collected during three weeks in January and February 2022 via the Swedish national PAEHR. Of 218 adolescent respondents, 60 reported having found an error (27.5%) and 44 (20.2%) had found missing information. Most adolescents did not take any action upon identifying an error or an omission (64.0%). Omissions were more often perceived as serious than errors. These findings call for development of policy and PAEHR design that facilitates reports of errors and omissions for adolescents, which could both improve trust and support the individual's transition into an involved and engaged adult patient.
Patients feeling offended by reading records online is a concern among healthcare professionals, however previously published work has focused on adult patients. Here, a survey was used to explore and compare experiences of offense among adolescents (15-19 years old) and young adults (20-24 years old). Findings indicated that while the ratio of those offended did not differ between adolescents and young adults, reasons for feeling offended did.
An increasing number of countries are implementing patient access to electronic health records (EHR). However, EHR access for parents, children and adolescents presents ethical challenges of data integrity, and regulations vary across providers, regions, and countries. In the present study, we compare EHR access policy for parents, children and adolescents in four countries. Documentation from three areas: upper age limit of minors for which parents have access; age at which minors obtain access; and possibilities of access restriction and extension was collected from Sweden, Norway, Finland, and Estonia. Results showed that while all systems provided parents with automatic proxy access, age limits for its expiry differed. Furthermore, a lower minimum age than 18 for adolescent access was present in two of four countries. Differences between countries and potential implications for adolescents are discussed. We conclude that experiences of various approaches should be explored to promote the development of EHR regulations for parents, children and adolescents that increases safety, quality, and equality of care.
This is a case study exploring gaze-based AT as early intervention, for a ten-month-old non-verbal child with severe physical impairments. Data was collected repeatedly over time through questionnaires, videos clips, and field observations until the child was three years old.
This session focuses on the latest developments of gaze-based assistive technology (AT) and the impact of gaze-based AT interventions in the home and at school. In particular, for play, communication, assessments and early intervention. The discussion focuses on how research findings can advance future developments.
Patient portals are used as a means to facilitate communication, performing administrative tasks, or accessing one's health record. In a retrospective analysis of real-world data from the Swedish National Patient Portal 1177.se, we describe the rate of adoption over time, as well as how patterns of device usage have changed over time. In Jan 2013, 53% of all visits were made from a computer, and 38% from a mobile phone. By June 2020, 77% of all visits were made from a mobile phone and only 20% from a computer. These results underline the importance of designing responsive patient portals that allow patients to use any device without losing functionality or usability.
While research on the effects of patient access to health records is increasing, a basic understanding of the spread of patient-accessible electronic health records worldwide is lacking. In this survey of healthcare experts with professional and personal experience from 29 countries, we explored the state of patient online record access (ORA). We asked participants whether ORA exists in their country and which information is available through it. Experts in all polled countries reported having some national access to health records, with 6 (21%) countries providing exclusively paper-based records and 23 (79%) countries having ORA. Overview of test/lab results and prescription/medication lists were the most commonly available information. Free-text clinical notes were accessible in less than half of the surveyed countries (12, 41%). We will continue to map the state of patient ORA, focusing on traditionally underrepresented countries.
Smart glasses, defined as a computerized communicator with a transparent screen and a video camera, wearable as a pair of glasses, have started to be tested for a variety of health related applications. This poster reviews some of the early experiences and gives a series of proposals for possible uses in medicine with a particular emphasis on medical education.
For healthcare personnel, the work environment is already challenging, and when eHealth systems are introduced they are often considered to further add to the complexity. This paper investigates the impact of patients' access to their electronic health records on healthcare professionals' work environment in a primary care setting in Sweden. A work environment theory-driven analysis, focusing on perceived demands, control and support, was conducted on 14 semi-structured interviews of different primary care professionals. The professionals expressed a slight increase in demands, loss of control and some increase and decrease of support. This study discusses insights on how patients' access to health records can have an impact on healthcare professionals' work environment.
Patients' online record access is a worldwide phenomenon, where Sweden is one of the pioneers in actual countrywide implementation. Healthcare professionals (HCPs) have previously raised usability issues with e-health systems and proposed several solutions, yet no studies have explored PAEHRs from this perspective. The aim of this study was to describe primary HCPs' suggestions on how the Swedish online record could be improved. They (n=14) were asked what they would like to improve with the system to increase usability and usefulness for patients or for themselves. Suggestions covered expanding what patients could view, simplification of the service for both the patients and themselves, adding feedback functions, and limiting access to only signed records.
There are numerous advantages described of how imaging technology can support forensic examinations. However, postmortem examinations of bodies are mainly performed to address demands which differ from those of traditional clinical image processing. This needs to be kept in mind when gathering information from image data sets for forensic purposes. To support radiologists and forensicclinicians using Virtual Autopsy technologies, an initial workflow study regarding post-mortem imaging has been performed, aiming to receive an improved understanding of how Virtual Autopsyworkstations, image data sets and processes can be adjusted to support and improve conventional autopsies. This paper presents potential impacts and a current forensic Virtual Autopsy workflowaiming to form a foundation for collaborative procedures that increase the value of Virtual Autopsy. The workflow study will provide an increased and mutual understanding of involved professionals. In addition, insight into future forensic workflows based on demands from both forensic and radiologist perspectives bring visualization and medical informatics researchers together to develop and improvethe technology and software needed.
It is crucial to involve the patient in the development of patient accessible eHealth systems. But who, how and when? Patientinvolvement in development of e-health services for citizens has gained little attention to date. It is important to highlight theexperiences, pros and cons, and explore new issues and future challenges that arise for all different stakeholders involved in e-healthdevelopment. One source of inspiration for this workshop is the European funded SUSTAINS project which aims to deploy e-healthservices with the patient as an important actor. Another is the Swedish research project My Care Pathways where focus is ondevelopment of new e-health services that enable the patient to follow and interact with their care processes. This workshop aims todiscuss the experiences made in ongoing European deployment projects of online e-health services as well as methods to improvepatient participation in such development based on current evaluations and future needs. The objective is to collect and disseminatevarious experiences from novel e-health service deployment in Europe; during the workshop active participation is desired via twitterand other eLearning tools, and afterwards the results of the workshop are published on easily accessible web sites.
The number of patients with multimorbidity has been steadily increasing in the modern aging societies. The European C3-Cloud project provides a multidisciplinary and patient-centered “Collaborative Care and Cure-system” in the management of elderly with multimorbidity, enabling continous coordination of care activities between multidisciplinary care teams (MDTs), patients and informal care givers (ICG). In this paper, we report how various components of the infrastructure were tested to fulfill the functional requirements and how the entire system was subjected to an early application testing involving different groups of end-users. MDTs from participating European regions were involved in requirement elicitation and test formulation, resulting in 57 questions, distributed via an internet platform, to 48 test participants (22 MDTs, 26 patients) from three pilot sites. The results indicate an overall high level of satisfaction for all Information and Communication Technologie (ICT) components among the users. The early testing also provided user feedback important to consider for technical improvement of the entire system.
Patients' increasing demands for medical information, the digitization of health records and the fast spread of Internet access form a basis of introducing new eHealth services. An international trend is to provide access for patients to health information of various kind. In Sweden, access by patients to their proper electronic health record (EHR) has been provided in a pilot county since November 2012. This eHealth service is controversial and criticism has arised from the clinical professions, mainly physicians. Two web surveys were conducted to discover whether the opinions of healthcare professionals differ; between staff that have had experience with patients accessing their own EHR and those who have no such expericence. Experienced nurses found the EHR more important for the patients and a better reform, compared to unexperienced nurses in the rest of the country. Similarly, physicians with their own experience had a more positive attitude compared to non-experienced physicians. The conclusion of this study is that healthcare professionals must be involved in the implementation of public eHealth services such as EHRs and that real experiences of the professionals should be better disseminated to their inexperienced peers.