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 ntervals 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.publishedVersio

No paper, but the same routines: a qualitative exploration of experiences in two Norwegian hospitals deprived of the paper based medical record

<p>Abstract</p> <p>Background</p> <p>It has been shown that implementation of electronic medical records (EMR) and withdrawal of the paper-based medical record is feasible, but represents a drastic change in the information environment of hospital physicians. Previous investigations have revealed considerable inter-hospital variations in EMR system use and user satisfaction. The aim of this study was to further explore changes of clinicians' work after the EMR system implementation process and how they experienced working in a paper-deprived information environment.</p> <p>Methods</p> <p>Qualitative study based on 18 semi-structured interviews with physicians in two Norwegian hospitals.</p> <p>Results</p> <p>Ten different but related characteristics of work within the EMR-based practice were identified; (1) there was closer clinical and administrative cooperation during the implementation processes; (2) there were greater benefits when everybody used the system; (3) systems supported freshmen better than experienced physicians; (4) the EMR was useful in regard to professional learning; (5) new users were given an introduction to the system by experienced; (6) younger clinicians reported different attitudes than senior clinicians, but this might be related to more than age and previous experience with computers; (7) the EMR made it easier to generate free-text notes, but this also created a potential for information overflow; (8) there is little or no support for mobile work; (9) instances of downtime are still experienced, and this influenced the attitude towards the system and (10) clinicians preferred EMR-only compared to combined paper and electronic systems.</p> <p>Conclusion</p> <p>Despite the removal of paper-based records from clinical workflow (a change that hospital clinicians perceived as highly useful), many of the old routines remained unchanged, limiting the potential of the EMR system. Thus, there is a need to not only remove paper in the physical sense, but also to established routines to fully achieve the benefits of an EMR system.</p

Shared patient information and trust: a qualitative study of a national eHealth system.

Background In Norway, as in other countries, national eHealth systems, such as the Summary Care Record (SCR), have been implemented to improve the collaboration around patients by sharing patient information between health professionals across healthcare institutions and administrative levels. Although widely implemented across the health and care services in Norway, evaluations of the SCR indicate less use than expected. There is a need for analysis that lays out the visions and expectations of the SCR and contrasts these with detailed observations of use in everyday health professional work. This study adds to the eHealth research field by exploring this reality. Method This paper has a qualitative design with an ethnographic approach, including participant observation, qualitative interviews, and a document review. Qualitative individual interviews with 22 health professionals and six weeks of participant observation were conducted, and eight documents were reviewed. The field notes and the interviewtranscriptions were analyzed following a stepwise-deductive induction analysis. Results The document review identified the expectations and visions of the SCR, including an underlying assumption of trust in shared patient information. However, this assumption is implicit and not recognized as a crucial element for success in the documents. In our observation and interview data, we found that health professionals do not necessarily trust information in the SCR. In fact, several procedures and routines to assess the trustworthiness of SCR information were identified that complicate and disturb the expected use. In our analysis, two main themes characterize the health professionals’ handling of the SCR: adapting to workflow and dealing with uncertainty. Conclusion Our study illustrates that unconditional trust in shared patient information is an implicit assumption in SCR policy documents, but in their everyday work health professionals do not necessarily unconditionally trust shared patient information. Rather, sharing patient information through technology, such as the SCR, requires of health professionals to critically assess the digital information. The information in the SCR, as all sources of information presented to health professionals, becomes an item for their constant trust-work. Our study is of value to policymakers, health information systems developers, and the field of practice both nationally and internationally

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.publishedVersio

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.acceptedVersion© 2019 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/BY-NC-ND/4.0/)

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.publishedVersio

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.publishedVersio

GDPR Compliance for Blockchain Applications in Healthcare

The transparent and decentralized characteristics associated with blockchain can be both appealing and problematic when applied to a healthcare use-case. As health data is highly sensitive, it is also highly regulated to ensure the privacy of patients. At the same time, access to health data and interoperability is in high demand. Regulatory frameworks such as GDPR and HIPAA are, amongst other objectives, meant to contribute to mitigating the risk of privacy violations in health data. Blockchain features can likely improve interoperability and access control to health data, and at the same time, preserve or even increase, the privacy of patients. Blockchain applications should address compliance with the current regulatory framework to increase real-world feasibility. This exploratory work indicates that published proof-of-concepts in the health domain comply with GDRP, to an extent. Blockchain developers need to make design choices to be compliant with GDPR since currently, none available blockchain platform can show compliance out of the box

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.publishedVersio