Design, Development, and Evaluation of an mHealth App for Reporting of Side Effects During Cytostatic Treatment: Usability Test and Interview Study.

BACKGROUND: Using mobile health (mHealth) interventions such as smartphone apps to deliver health services is an opportunity to engage patients more actively in their own treatment. Usability tests allow for the evaluation of a service by testing it out on the relevant users before implementation in clinical practice. OBJECTIVE: The objective of this study was to design, develop, and evaluate the user interface of an app that would aid patients with cancer in reporting a more comprehensive summary of their side effects. METHODS: The usability test was conducted by exposing patients with cancer to a prototype of an mHealth app that allowed for reporting of side effects from a chemotherapy regimen. After solving a set of 13 tasks, the test participants completed a system usability scale questionnaire and were interviewed using a semistructured interview guide. The interviews were later transcribed and analyzed. RESULTS: The 10 test participants had a mean age of 56.5 (SD 7.11) years. The mean total task completion time for the task-solving session was 240.15 (SD 166.78) seconds. The calculated system usability scale score was 92.5. Most participants solved most of the tasks without any major issues. A minority reported having difficulties using apps on smartphones in general. One patient never achieved a meaningful interaction with our app prototype. Most of those who engaged with the app approved of features that calmed them down, made them more empowered, and put them in control. They preferred to report on side effects in a detailed and concise manner. App features that provided specific advice could provoke both fear and rational action. CONCLUSIONS: The user tests uncovered design flaws that allowed for subsequent refining of an app that has the potential to enhance the safety of patients undergoing home-based chemotherapy. However, a refined version of the app is unlikely to be of value to all patients. Some might not be able to use apps on smartphones in general, or their ability to use apps is impaired because of their disease. This finding should have implications for health care providers' overall design of their follow-up service as the service must allow for all the patients to receive safe treatment whether they can use an mHealth app or not.

Keyphrase Identification Using Minimal Labeled Data with Hierarchical Context and Transfer Learning.

Interoperable clinical decision support system (CDSS) rules provide a pathway to interoperability, a well-recognized challenge in health information technology. Building an ontology facilitates creating interoperable CDSS rules, which can be achieved by identifying the keyphrases (KP) from the existing literature. However, KP identification for data labeling requires human expertise, consensus, and contextual understanding. This paper aims to present a semi-supervised KP identification framework using minimal labeled data based on hierarchical attention over the documents and domain adaptation. Our method outperforms the prior neural architectures by learning through synthetic labels for initial training, document-level contextual learning, language modeling, and fine-tuning with limited gold standard label data. To the best of our knowledge, this is the first functional framework for the CDSS sub-domain to identify KPs, which is trained on limited labeled data. It contributes to the general natural language processing (NLP) architectures in areas such as clinical NLP, where manual data labeling is challenging, and light-weighted deep learning models play a role in real-time KP identification as a complementary approach to human experts' effort.

Ontologies Applied in Clinical Decision Support System Rules: Systematic Review.

BACKGROUND: Clinical decision support systems (CDSSs) are important for the quality and safety of health care delivery. Although CDSS rules guide CDSS behavior, they are not routinely shared and reused. OBJECTIVE: Ontologies have the potential to promote the reuse of CDSS rules. Therefore, we systematically screened the literature to elaborate on the current status of ontologies applied in CDSS rules, such as rule management, which uses captured CDSS rule usage data and user feedback data to tailor CDSS services to be more accurate, and maintenance, which updates CDSS rules. Through this systematic literature review, we aim to identify the frontiers of ontologies used in CDSS rules. METHODS: The literature search was focused on the intersection of ontologies; clinical decision support; and rules in PubMed, the Association for Computing Machinery (ACM) Digital Library, and the Nursing & Allied Health Database. Grounded theory and PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 guidelines were followed. One author initiated the screening and literature review, while 2 authors validated the processes and results independently. The inclusion and exclusion criteria were developed and refined iteratively. RESULTS: CDSSs were primarily used to manage chronic conditions, alerts for medication prescriptions, reminders for immunizations and preventive services, diagnoses, and treatment recommendations among 81 included publications. The CDSS rules were presented in Semantic Web Rule Language, Jess, or Jena formats. Despite the fact that ontologies have been used to provide medical knowledge, CDSS rules, and terminologies, they have not been used in CDSS rule management or to facilitate the reuse of CDSS rules. CONCLUSIONS: Ontologies have been used to organize and represent medical knowledge, controlled vocabularies, and the content of CDSS rules. So far, there has been little reuse of CDSS rules. More work is needed to improve the reusability and interoperability of CDSS rules. This review identified and described the ontologies that, despite their limitations, enable Semantic Web technologies and their applications in CDSS rules.

Negotiating scientific knowledge in the development of an eHealth MOOC.

Interdisciplinary team communication in eHealth development is challenging because all disciplines have unique, intrinsic discursive practices, theories and artefacts. Due to these factors, members of interdisciplinary teams can experience problems in communication and collaboration. Through a centered focus, members can benefit individually, inspire one another, and ultimately reach a timely delivery of their common pedagogical goal(s). Using the lens of dialogism, this paper aims to identify the conceptual considerations that arose during the development of a Massive Open Online Course (MOOC) for higher education in eHealth. Methods included auto-ethnography and interdisciplinary dialogue supported by literacy artefacts, including visual material. Results yielded a visual tool for meta-assessment of team communication, and an organizing principle for topics in the MOOC. A major implication is that especially for eHealth, scientific communicative competence of experts-while establishing a common understanding-can lead to a unique and meaningful delivery of high pedagogical quality.

Comparison of a Voluntary Safety Reporting System to a Global Trigger Tool for Identifying Adverse Events in an Oncology Population.

OBJECTIVE: There is a lack of research on adverse event (AE) detection in oncology patients, despite the propensity for iatrogenic harm. Two common methods include voluntary safety reporting (VSR) and chart review tools, such as the Institute for Healthcare Improvement's Global Trigger Tool (GTT). Our objective was to compare frequency and type of AEs detected by a modified GTT compared with VSR for identifying AEs in oncology patients in a larger clinical trial. METHODS: Patients across 6 oncology units (from July 1, 2013, through May 29, 2015) were randomly selected. Retrospective chart reviews were conducted by a team of nurses and physicians to identify AEs using the GTT. The VSR system was queried by the department of quality and safety of the hospital. Adverse event frequencies, type, and harm code for both methods were compared. RESULTS: The modified GTT detected 0.90 AEs per patient (79 AEs in 88 patients; 95% [0.71-1.12] AEs per patient) that were predominantly medication AEs (53/79); more than half of the AEs caused harm to the patients (41/79, 52%), but only one quarter were preventable (21/79; 27%). The VSR detected 0.24 AEs per patient (21 AEs in 88 patients; 95% [0.15-0.37] AEs per patient), a large plurality of which were medication/intravenous related (8/21); more than half did not cause harm (70%). Only 2% of the AEs (2/100) were detected by both methods. CONCLUSIONS: Neither the modified GTT nor the VSR system alone is sufficient for detecting AEs in oncology patient populations. Further studies exploring methods such as automated AE detection from electronic health records and leveraging patient-reported AEs are needed.

A Systematic Approach to Configuring MetaMap for Optimal Performance.

BACKGROUND: MetaMap is a valuable tool for processing biomedical texts to identify concepts. Although MetaMap is highly configurative, configuration decisions are not straightforward. OBJECTIVE: To develop a systematic, data-driven methodology for configuring MetaMap for optimal performance. METHODS: MetaMap, the word2vec model, and the phrase model were used to build a pipeline. For unsupervised training, the phrase and word2vec models used abstracts related to clinical decision support as input. During testing, MetaMap was configured with the default option, one behavior option, and two behavior options. For each configuration, cosine and soft cosine similarity scores between identified entities and gold-standard terms were computed for 40 annotated abstracts (422 sentences). The similarity scores were used to calculate and compare the overall percentages of exact matches, similar matches, and missing gold-standard terms among the abstracts for each configuration. The results were manually spot-checked. The precision, recall, and F-measure (ß =1) were calculated. RESULTS: The percentages of exact matches and missing gold-standard terms were 0.6-0.79 and 0.09-0.3 for one behavior option, and 0.56-0.8 and 0.09-0.3 for two behavior options, respectively. The percentages of exact matches and missing terms for soft cosine similarity scores exceeded those for cosine similarity scores. The average precision, recall, and F-measure were 0.59, 0.82, and 0.68 for exact matches, and 1.00, 0.53, and 0.69 for missing terms, respectively. CONCLUSION: We demonstrated a systematic approach that provides objective and accurate evidence guiding MetaMap configurations for optimizing performance. Combining objective evidence and the current practice of using principles, experience, and intuitions outperforms a single strategy in MetaMap configurations. Our methodology, reference codes, measurements, results, and workflow are valuable references for optimizing and configuring MetaMap.

Medical Students' Perceptions of a Blockchain-Based Decentralized Work History and Credentials Portfolio: Qualitative Feasibility Study.

BACKGROUND: Increased digitization of health care might challenge some of the trust functions that are established in a traditional health care system. We have, with the concept of VerifyMed, developed a decentralized service for work history and competence verification, as a means to increase trust in the virtual interaction between a patient and a caregiver, mitigate administrative burden, and provide patient-reported outcomes seamlessly for health professionals. OBJECTIVE: This research aimed to validate the use case of a decentralized credentials service for health care professionals in Norway. We also aimed to evaluate the proof-of-concept of VerifyMed, a blockchain-based credential service for health care professionals. METHODS: A qualitative approach was applied with data collection through 9 semistructured interviews and 2 focus groups (one with 4 participants and the other with 5 participants). The System Usability Scale (SUS) was used as a part of the interviews. Data were analyzed through the principles of systematic text condensation. The recruitment of participants ended when it was concluded that the data had reached saturation. RESULTS: The following 5 themes were identified from the interviews and focus groups: (1) the need for aggregated storage of work- and study-related verification, (2) trust in a virtual health care environment, (3) the potential use of patient feedback, (4) trust in blockchain technology, and (5) improvements of the VerifyMed concept. The SUS questionnaire gave a score of 69.7. CONCLUSIONS: This study has validated the need for a decentralized system where health care professionals can control their credentials and, potentially, their reputation. Future work should update the VerifyMed system according to this input. We concluded that a decentralized system for the storage of work-related verifiable credentials could increase trust in a virtualized health care system.

Blockchain for Increased Trust in Virtual Health Care: Proof-of-Concept Study.

BACKGROUND: Health care systems are currently undergoing a digital transformation that has been primarily triggered by emerging technologies, such as artificial intelligence, the Internet of Things, 5G, blockchain, and the digital representation of patients using (mobile) sensor devices. One of the results of this transformation is the gradual virtualization of care. Irrespective of the care environment, trust between caregivers and patients is essential for achieving favorable health outcomes. Given the many breaches of information security and patient safety, today's health information system portfolios do not suffice as infrastructure for establishing and maintaining trust in virtual care environments. OBJECTIVE: This study aims to establish a theoretical foundation for a complex health care system intervention that aims to exploit a cryptographically secured infrastructure for establishing and maintaining trust in virtualized care environments and, based on this theoretical foundation, present a proof of concept that fulfills the necessary requirements. METHODS: This work applies the following framework for the design and evaluation of complex intervention research within health care: a review of the literature and expert consultation for technology forecasting. A proof of concept was developed by following the principles of design science and requirements engineering. RESULTS: This study determined and defined the crucial functional and nonfunctional requirements and principles for enhancing trust between caregivers and patients within a virtualized health care environment. The cornerstone of our architecture is an approach that uses blockchain technology. The proposed decentralized system offers an innovative governance structure for a novel trust model. The presented theoretical design principles are supported by a concrete implementation of an Ethereum-based platform called VerifyMed. CONCLUSIONS: A service for enhancing trust in a virtualized health care environment that is built on a public blockchain has a high fit for purpose in Healthcare 4.0.

Disease-associated reference intervals for twenty laboratory tests in patients with rheumatoid arthritis, Crohn's disease or ulcerative colitis.

BACKGROUND: Population based reference intervals are fundamental for interpreting results for quantitative laboratory tests. In patients with a specific chronic disorder, however, results of various tests may regularly be different than in healthy individuals. Health-associated reference intervals may therefore have limited value in such patients. Instead, disease-associated reference intervals may be useful, as they describe the results distribution in populations resembling the specific patients. Few disease-associated reference intervals are available in the literature. The aim of this study was to estimate reference intervals for common laboratory tests for patient populations with rheumatoid arthritis, Crohn's disease or ulcerative colitis without significant comorbidity, using a novel algorithm. MATERIAL AND METHODS: Laboratory test results and hospital discharge diagnoses were collected for relevant patients. An algorithm was developed to identify discharge diagnoses significantly associated with high or low results for specific tests. After excluding patients with such diagnoses, reference intervals were estimated, representing results distributions in patients with each of the specific chronic disorders, but without significant comorbidity. RESULTS: Disease-associated reference intervals were estimated for 20 common laboratory tests. Most of the estimated reference limits were significantly different from corresponding health-associated reference limits. Thirty percent of the estimated reference intervals were different from estimates based on crude patient populations, indicating that the algorithm applied managed to exclude patients with relevant comorbidity. CONCLUSION: Disease-associated reference intervals could be estimated for a number of tests in patients with rheumatoid arthritis, ulcerative colitis or Crohn's disease using a highly automated algorithm based on routinely recorded patient data.

Participants' views and experiences from setting up a shared patient portal for primary and specialist health services- a qualitative study.

BACKGROUND: Recently, there has been an increasing focus among healthcare organisations on implementing patient portals. Previous studies have mainly focussed on the experiences of patient portal use. Few have investigated the processes of deciding what content and features to make available, in particular for shared portals across healthcare domains. The aim of the study was to investigate views on content and experiences from the configuration process among participants involved in setting up a shared patient portal for primary and specialist health services. METHODS: A qualitative study including 15 semi-structured interviews with persons participating in patient portal configuration was conducted from October 2019 to June 2020. RESULTS: Whether a shared patient portal for all the health services in the region should be established was not questioned by any of the informants. It was experienced as a good thing to have numerous participants present in the discussions on configuration, but it also was said to increase the complexity of the work. The informants considered a patient portal to be of great value for patient care, among other things because it would lead to improvements in patient follow-up and increased patient empowerment. Nevertheless, some informants advocated caution as they thought the patient portal possibly could lead to an increase in healthcare providers' workloads and to anxiety and worries, as well as to inequality in access to health care among patients. The findings were categorized into the themes 'A tool for increased patient involvement', 'Which information should be available for the patient', 'Concerns about increased workload', 'Too complex to use versus not interesting enough', 'Involving all services' and 'Patient involvement'. CONCLUSIONS: Establishing a shared patient portal for primary and specialist health services was considered unproblematic. There was, however, variation in opinions on which content and features to include. This variation was related to concerns about increasing the workload for health care providers, causing anxiety and inequality among patients, and ensuring that the solution would be interesting enough to adopt.

Cancer Patients' Perceived Value of a Smartphone App to Enhance the Safety of Home-Based Chemotherapy: Feasibility Study.

BACKGROUND: Oral anticancer therapies can be self-administered by patients outside the hospital setting, which poses challenges of adherence to a drug plan and monitoring of side effects. Modern information technology may be developed and implemented to address these pertinent issues. OBJECTIVE: The aim of this study was to explore how a smartphone app developed through a stepwise, iterative process can help patients using oral chemotherapy to take their drug, and to report adherence and side effects in a reliable and verifiable manner. METHODS: Fourteen patients starting capecitabine treatment were included in this study and used the smartphone app in addition to regular follow up of capecitabine treatment. Nine of these patients fulfilled the treatment plan and were interviewed based on a semistructured interview guide and the System Usability Scale (SUS). In addition, two focus groups were completed with 7 oncologists and 7 oncology nurses, respectively. Interview data were analyzed in accordance with the principles of systematic text condensation. Features of the app were also assessed. RESULTS: The smartphone app provided the patients with a feeling of reassurance regarding correct adherence of their oral chemotherapy treatment. They used the app as a memory tool about their treatment and possible serious side effects, as well as for treatment education. Patients expressed concerns about using the app to report side effects that were not considered to be obviously serious, fearing overreporting. The health personnel expressed an overall positive attitude to integrate this new tool in their everyday work. CONCLUSIONS: Patients on oral chemotherapy treatment at home felt safe and found the app to be helpful. The app promoted learning about their treatment and made the patients more independent of the cancer clinic, reducing the need for the clinic's limited resources for follow up of patients on oral anticancer medications.

Blockchain in healthcare and health sciences-A scoping review.

BACKGROUND: Blockchain can be described as an immutable ledger, logging data entries in a decentralized manner. This new technology has been suggested to disrupt a wide range of data-driven domains, including the health domain. OBJECTIVE: The purpose of this study was to systematically review, assess and synthesize peer-reviewed publications utilizing/proposing to utilize blockchain to improve processes and services in healthcare, health sciences and health education. METHOD: A structured literature search on the topic was conducted in October 2018 relevant bibliographic databases. RESULT: 39 publications fulfilled the inclusion criteria. The result indicates that Electronic Health Records and Personal Health Records are the most targeted areas using blockchain technology. Access control, interoperability, provenance and data integrity are all issues that are meant to be improved by blockchain technology in this field. Ethereum and Hyperledger fabric seem to be the most used platforms/frameworks in this domain. CONCLUSION: This study shows that the endeavors of using blockchain technology in the health domain are increasing exponentially. There are areas within the health domain that potentially could be highly impacted by blockchain technology.

Development and Progression in Danish eHealth Policies: Towards Evidence-Based Policy Making.

In order to realise the potential benefits of eHealth, governments develop eHealth policies to define and prioritise initiatives, the strategic goals and the resulting benefits. During the 23 years with eHealth policies in Denmark only a few status reports with a systematic and transparent evaluation have been made. This paper advocates a more systematic approach to strategic planning of development and implementation of eHealth systems, by encouraging the concept of evidence-based policy making through analysis of how focus of the Danish eHealth policies have evolved. The Danish eHealth policies have very different framings following the different focus points for the policies. Interestingly, strategies for evaluating the devolopment of eHealth and eHealth policies were very sparcely noted in the policies. For the first time the de-emphasising of evaluations of eHealth policies in Denmark has been empirically demonstrated, thus undermining the objective of obtaining evidence-based eHealth policies.

Monitoring and Benchmarking eHealth in the Nordic Countries.

The Nordic eHealth Research Network, a subgroup of the Nordic Council of Ministers eHealth group, is working on developing indicators to monitor progress in availability, use and outcome of eHealth applications in the Nordic countries. This paper reports on the consecutive analysis of National eHealth policies in the Nordic countries from 2012 to 2016. Furthermore, it discusses the consequences for the development of indicators that can measure changes in the eHealth environment arising from the policies. The main change in policies is reflected in a shift towards more stakeholder involvement and intensified focus on clinical infrastructure. This change suggests developing indicators that can monitor understandability and usability of eHealth systems, and the use and utility of shared information infrastructure from the perspective of the end-users - citizens/patients and clinicians in particular.

Translating eHealth Visions from Strategy to Practice - A Benefit Management Approach.

The municipalities and the Regional Health Authorities in Central Norway have been assigned a mandate to implement a shared electronic health record, Helseplattformen, reflecting the visions set out in the national eHealth white paper 'One Citizen - One Record'. This study identifies and describe anticipated benefit streams of clinical decision support in 'One Citizen - One Record' and the user requirement specification documents of Helseplattformen. This study found that the benefit stream of clinical decision support translates from the health policy visions stated in 'One Citizen - One Record' into Helseplattformen. However, business changes, although a critical element of achieving benefits, were not emphasised in either. This calls for the programme of Helseplattformen to pay careful attention to how the information system and information technology requirements must be accompanied by enabling changes as well as business changes in order to achieve the identified benefits of 'One Citizen - One Record' and Helseplattformen.

Many Mobile Health Apps Target High-Need, High-Cost Populations, But Gaps Remain.

With rising smartphone ownership, mobile health applications (mHealth apps) have the potential to support high-need, high-cost populations in managing their health. While the number of available mHealth apps has grown substantially, no clear strategy has emerged on how providers should evaluate and recommend such apps to patients. Key stakeholders, including medical professional societies, insurers, and policy makers, have largely avoided formally recommending apps, which forces patients to obtain recommendations from other sources. To help stakeholders overcome barriers to reviewing and recommending apps, we evaluated 137 patient-facing mHealth apps-those intended for use by patients to manage their health-that were highly rated by consumers and recommended by experts and that targeted high-need, high-cost populations. We found that there is a wide variety of apps in the marketplace but that few apps address the needs of the patients who could benefit the most. We also found that consumers' ratings were poor indications of apps' clinical utility or usability and that most apps did not respond appropriately when a user entered potentially dangerous health information. Going forward, data privacy and security will continue to be major concerns in the dissemination of mHealth apps.

The Impact of an eHealth Portal on Health Care Professionals' Interaction with Patients: Qualitative Study.

BACKGROUND: People who undergo weight loss surgery require a comprehensive treatment program to achieve successful outcomes. eHealth solutions, such as secure online portals, create new opportunities for improved health care delivery and care, but depend on the organizational delivery systems and on the health care professionals providing it. So far, these have received limited attention and the overall adoption of eHealth solutions remains low. In this study, a secure eHealth portal was implemented in a bariatric surgery clinic and offered to their patients. During the study period of 6 months, 60 patients and 5 health care professionals had access. The portal included patient information, self-management tools, and communication features for online dialog with peers and health care providers at the bariatric surgery clinic. OBJECTIVE: The aim of this study was to characterize and assess the impact of an eHealth portal on health care professionals' interaction with patients in bariatric surgery. METHODS: This qualitative case study involved a field study consisting of contextual interviews at the clinic involving observing and speaking with personnel in their actual work environment. Semi-structured in-depth interviews were conducted with health care professionals who interacted with patients through the portal. Analysis of the collected material was done inductively using thematic analysis. RESULTS: The analysis revealed two main dimensions of using an eHealth portal in bariatric surgery: the transparency it represents and the responsibility that follows by providing it. The professionals reported the eHealth portal as (1) a source of information, (2) a gateway to approach and facilitate the patients, (3) a medium for irrevocable postings, (4) a channel that exposes responsibility and competence, and (5) a tool in the clinic. CONCLUSIONS: By providing an eHealth portal to patients in a bariatric surgery program, health care professionals can observe patients' writings and revelations thereby capturing patient challenges and acting and implementing measures. Interacting with patients through the portal can prevent dropouts and deterioration of patients' health. However, professionals report on organizational challenges and personal constraints related to communicating with patients in writing online. Further development of guidelines and education of health care professionals about how to handle, prioritize, communicate, and facilitate patients online is required in addition to increased attention to the organizational infrastructures and incentives for enabling such solutions in health care.

Continuous interprofessional coordination in perioperative work: an exploratory study.

Coordination of perioperative work is challenging. Advancements in diagnostic and therapeutic possibilities have not been followed by similar advancements in the ability to coordinate care. In this paper, we report on a study that explored the nature of continuous coordination as practiced by perioperative staff in order to coordinate their own activities with respect to those of their colleagues. We conducted in-depth interviews (n = 14), and combined observations and focused interviews (n = 31) with perioperative staff (physicians, nurses, technicians, and cleaners) at a major university hospital in Norway. Data were analysed qualitatively with systematic text condensation. The results indicated that a surgical schedule was important for informing staff members about the cases and tasks they had been assigned. Staff also depended on ad hoc, explicit communication to ensure timeliness of particular perioperative activities. This, however, left little room for adjustments of other activities. Hence, to be able to proactively coordinate their own work some staff tried to predict future perioperative activities by observing the workplace, monitoring the surgical scheduling software for changes, and sharing their colleagues' progress updates and predictions. These findings could be important for those developing support for perioperative coordination.