Nationwide citizen access to their health data: analysing and comparing experiences in Denmark, Estonia and Australia.

BACKGROUND: Most countries face an ageing population, increasing chronic diseased, and constrictions on budget for providing health services. Involving patients in their own care by allowing them access to their patient data is a trend seen in many places. METHODS: Data on the type and level of access citizens have to their own health data in three countries was gathered from public sources. RESULTS: Data from each individual country is presented and the experiences of Denmark, Estonia and Australia are examined whilst similarities and differences explored. The discussion adopts a citizen-centred perspective to consider how the different e-portal systems support, protect and structure citizen interactions with their own health data in three key areas: Security, privacy and data protection; User support; and Citizen adoption and use. CONCLUSIONS: The paper highlights the impact of opt-in/opt-out approaches on citizen access and the lack of a structured approach to addressing differences in citizen health and e-health literacy. This research also confirms while current data provides detail on the availability and use of personal health data by citizens, questions still remain over the ultimate impact on patient outcomes of these initiatives. It is anticipated the insights generated from the three countries experiences, supporting citizen access to their health data will be useful to improve these initiatives and guide other countries aspiring to support similar initiatives.

Constructive eHealth evaluation: lessons from evaluation of EHR development in 4 Danish hospitals.

BACKGROUND: Information and communication sources in the healthcare sector are replaced with new eHealth technologies. This has led to problems arising from the lack of awareness of the importance of end-user involvement in eHealth development and of the difficulties caused by using traditional summative evaluation methods. The Constructive eHealth evaluation method (CeHEM) provides a solution to these problems by offering an evaluation framework for supporting and facilitating end-user involvement during all phases of eHealth development. The aim of this paper is to support this process by sharing experiences of the eHealth evaluation method used in the introduction of electronic health records (EHR) in the North Denmark Region of Denmark. It is the first time the fully developed method and the experiences on using the CeHEM in all five phases of a full lifecycle framework is presented. METHODS: A case study evaluation of the EHR development process in the North Denmark Region was conducted from 2004 to 2010. The population consisted of clinicians, IT professionals, administrators, and vendors. The study involved 4 hospitals in the region. Data were collected using questionnaires, observations, interviews, and insight gathered from relevant documents. RESULTS: The evaluation showed a need for a) Early involvement of clinicians, b) The best possible representation of clinicians, and c) Workload reduction for those involved. The consequences of not providing this were a lack of ownership of decisions and negative attitudes towards the clinical benefits related to these decisions. Further, the result disclosed that by following the above recommendations, and by providing feedback to the 4 actor groups, the physicians' involvement was improved. As a result they took ownership of decisions and gained a positive attitude to the clinical benefits. CONCLUSIONS: The CeHEM has proven successful in formative evaluation of EHR development and can point at important issues that need to be taken care of by management. The method provides a framework that takes care of feedback and learning during eHealth development. It can thus support successful eHealth development in a broader context while building on a well-known success factor: end-user involvement in eHealth development.

Clinical simulation: A method for development and evaluation of clinical information systems.

Use of clinical simulation in the design and evaluation of eHealth systems and applications has increased during the last decade. This paper describes a methodological approach for using clinical simulations in the design and evaluation of clinical information systems. The method is based on experiences from more than 20 clinical simulation studies conducted at the ITX-lab in the Capital Region of Denmark during the last 5 years. A ten-step approach to conducting simulations is presented in this paper. To illustrate the approach, a clinical simulation study concerning implementation of Digital Clinical Practice Guidelines in a prototype planning and coordination module is presented. In the case study potential benefits were assessed in a full-scale simulation test including 18 health care professionals. The results showed that health care professionals can benefit from such a module. Unintended consequences concerning terminology and changes in the division of responsibility amongst healthcare professionals were also identified, and questions were raised concerning future workflow across sector borders. Furthermore unexpected new possible benefits concerning improved communication, content of information in discharge letters and quality management emerged during the testing. In addition new potential groups of users were identified. The case study is used to demonstrate the potential of using the clinical simulation approach described in the paper.

National Trial Overview: Towards Accessible and Patient-Centered Healthcare.

This protocol paper explores the initiative to build and implement a National Trial Overview to make clinical trials more accessible to patients and health professionals in Denmark. The paper address how a user-centered evaluation of the platform will be conducted and how the National Trial Overview can contribute to enhancing diversity, equity, and inclusion of patients and health professionals, and make access to clinical trials more patient-centered.

A Model for Context-Sensitive Digital Integrators.

The realization of benefits from health information technology (HIT) implementation takes place in the long tail of implementation that must integrate technology, work practices and contextual factors. While formal health informatics education programs exist, they tend to be focused at the strategic management or specialized implementation level. HIT support at the local level often falls to clinical care staff that have little or no formal training in HIT implementation. This paper will expand on the term context-sensitive digital integrators (CSDI) as a role that could support local implementation. We discuss the CSDI role, including terminology, competencies and the role context sensitivity plays in implementation, and how CSDIs could be better supported and trained in different contexts.

Citizens' Access to Online Health Information - An International Survey of IMIA Member Countries.

Citizens' access to their online health information is pivotal. Therefore, this study examines citizens' access to their online health information across countries and healthcare settings. The study is based on a survey design targeting the 98 IMIA representatives of the national societies. Results indicate that Test results and Medications are the two types of online information that citizens in most cases have access to. Ten countries provide citizens access to all the different types of information included in the study. That relatively few countries provide citizens access to all the included types of online health information underscores the importance of continuous emphasis on accessibility and research within this field.

Nordic Citizens' Willingness to Share Digital Health Data.

The quality of the digital healthcare systems relies on citizens' willingness to share their digital health data. This makes citizens' use, perceptions, and attitudes towards digital healthcare systems pivotal. The study presented here examines Nordic citizens' willingness to share digital health data with healthcare providers and for research purposes. A cross-sectional study design was applied to obtain answers from citizens in Denmark, Finland, Iceland, Norway, and Sweden. The results are based on answers from 5078 citizens across the five countries. Results based on descriptive statistics indicate that the majority of Nordic citizens are willing to share health data that has clinical relevance with healthcare providers and for research purposes. The odds ratio analysis reveals that citizens' odds of sharing health data decreases with age and increases with the level of education. Conclusively, this study shows that most Nordic citizens are willing to share their health data, influenced by age and level of education. Awareness of and efforts to support citizens who are unable or unwilling to actively use and engage with the digital healthcare system is recommended.

Towards Accountable E-Health Policies in the Nordic Countries.

The Nordic Countries are seen as forerunners in the field of digital health technologies and national implementation has been guided by sector specific strategies for many years. In the context of new European legislation such as the European Health Data Space (EHDS), a review of the existing strategies is indicated. The objective of this policy analysis is to assess and compare the scope, ambitions and extent of accountability in national-level digital health policies in the Nordic countries. The scope of the policies from the five countries were largely centred around a) empowering and activating citizens; b) a shift towards prevention and digital first; c) supporting health operations; d) doing the groundwork; e) making health data more available in research and innovation workflows and f) supporting health personnel. Finland comes out as the most ambitious country with the aim to transform their health system by means of digitalisation. Both Finland and Iceland work towards prevention and the digital first ambition due to large populations in rural areas. These two countries also present the most accountable policies, meaning that their policy documents are the most transparent as to how they arrived at the conclusions and how they are to evaluate the achievements.

Citizens Access to Health Information in National Portals in the Nordic Countries.

National eHealth portals for citizens are available in the five Nordic countries. This study describes and compares the Nordic citizen portals and identifies variations in content access and functionality. The findings suggest that availability of information and services depend on the organisation of the health system, the connection to national health information exchange platforms and incentives for providing data and services.

Active Learning Pipeline to Identify Candidate Terms for a CDSS Ontology.

Ontology is essential for achieving health information and information technology application interoperability in the biomedical fields and beyond. Traditionally, ontology construction is carried out manually by human domain experts (HDE). Here, we explore an active learning approach to automatically identify candidate terms from publications, with manual verification later as a part of a deep learning model training and learning process. We introduce the overall architecture of the active learning pipeline and present some preliminary results. This work is a critical and complementary component in addition to manually building the ontology, especially during the long-term maintenance stage.

Benefits of a clinical planning and coordination module: a simulation study.

Digital Clinical Practice Guidelines are commonly used in Danish health care. Planning and decision support are particularly important to patients with chronic diseases, who often are in contact with General Practitioners, Community Nurses and hospitals. In the Capital Region of Denmark the potential benefits of a planning and coordination module has been assessed in a full-scale simulation test including 18 health care professionals. The results showed that health care professionals can benefit from such a module. Furthermore unexpected new possible benefits concerning communication and quality management emerged during the test and potential new groups of users were identified.

Decentralized Clinical Trials: Potentials for Equity in Digital Health.

The COVID-19 pandemic has rapidly increased the possibilities for conducting Decentralized Clinical Trials (DCT). This paper addresses the potential for conducting DCT in Denmark and discusses how this potential can improve equity in digital healthcare. From stakeholder interviews, we learned that DCT has the potential to be implemented, as DCT guidelines are in place in Denmark. DCT can potentially improve equal access and inclusion of diverse populations, home administration of medication, retention and compliance, and monitoring of patients and side effects. While DCT has potential in a Danish context, the challenges regarding DCT need to be considered carefully, particularly concerning equity in digital health.

Perceptions of Learning Activities in Electronic Health Record Transition.

Learning activities are at the front-line of first impressions. In this paper, the education and training program for a large electronic health record transition project is presented. Management, and staff were interviewed before, during, and after implementation on their perception, reception, and benefit of various learning activities. Daily clinical work and obligations complicate adherence to learning programs, and the clinical professions differ in their approach to mandatory activities. Local learning activities empower staff, and planners should consider embedding room for adjustment of learning program during implementation.

The Inverse Data Law: Market Imperatives, Data, and Quality in AI Supported Care.

Over the last decade, the explosion of "Big Data" and its fusion with AI has led many to believe that the development and integration of AI systems in healthcare will usher in a transformative revolution that democratises access to high quality healthcare and collectively improve patient outcomes. However, the nature of market forces in the evolving data economy, has started to show evidence that the opposite is more likely to be true. This paper argues that there is a poorly understood "Inverse Data Law" that will exacerbate the widening health divide between affluent and marginalised communities because: (1) data used to train AI systems favour individuals that are already engaged with healthcare, who have the lowest burden of disease, but the highest purchasing power; and (2) data used to drive market decisions around investment in AI health technology favours tools that increase the commodification of healthcare through over-testing, over-diagnosis, and the acute and episodic management of disease, over tools that support the patient to prevent disease. This dangerous combination is more likely to cripple efforts towards preventative medicine, as data collection and utilisation tends to be inversely proportional to the needs of the patients served - the inverse data law. The paper concludes by introducing important methodological considerations in the design and evaluation of AI systems to promote systems improvement for marginalised users.

Differential Perceptions of What Constitutes a Medical Error Associated with Electronic Medical Records.

Perceptions of errors associated with healthcare information technology (HIT) often depend on the context and position of the viewer. HIT vendors posit very different causes of errors than clinicians, implementation teams, or IT staff. Even within the same hospital, members of departments and services often implicate other departments. Organizations may attribute errors to external care partners that refer patients, such as nursing homes or outside clinics. Also, the various clinical roles within an organization (e.g., physicians, nurses, pharmacists) can conceptualize errors and their root causes differently. Overarching all these perceptual factors, the definitions, mechanisms, and incidence of HIT-related errors are remarkably conflictual. There is neither a universal standard for defining or counting these errors. This paper attempts to enumerate and clarify the issues related to differential perceptions of medical errors associated with HIT. It then suggests solutions.

One Health: Insights from Organizational & Social, Technology Assessment and Human Factors Perspectives.

OBJECTIVES: To offer diverse but complementary perspectives on how biomedical and health informatics can be informed by and help to achieve the vision of One Health. METHODS: Overview of key considerations and critical discussion of common themes, barriers and opportunities, based on collaborative review by International Medical Informatics Association (IMIA) working group members active in related fields. RESULTS: Health and care systems are complex sociotechnical systems that need explicit design and implementation strategies to align with the goals of One Health. The evidence-based health informatics paradigm and associated frameworks for evaluation of digital health technologies need to broaden their scope to take full account of the One Health approach. Informatics has specific contributions to make to One Health, for example by improved user experience reducing energy consumption and effective app design enhancing medication adherence. CONCLUSIONS: One Health is inherently intertwined with ergonomic, sociotechnical and evaluation perspectives in biomedical and health informatics. Health is a planetary issue that requires interdisciplinary collaborative action. The theories and principles of biomedical and health informatics offer many opportunities to transform digital health technology to better serve the One Health agenda.

Equity in digital healthcare - the case of Denmark.

As digital healthcare services are expanding in use and purpose in a Danish context so are the functionalities embedded in these, constituting citizens' access to healthcare services and personal health data. In Denmark, the impact of inequalities in digital healthcare remains largely unexplored, making it crucial to pay close attention to this aspect as the digital transformation of the sector progresses. According to the Danish Health Act (2019), the Danish healthcare system is required to ensure easy and equal access to healthcare, high-quality treatment, coherent patient pathways, freedom of choice, easy access to information, transparency, and short waiting times for every citizen. These are focal law-based requirements influenced by the digitalisation of healthcare. Hence, based on insights from a highly digitalised country, in this case, Denmark, this paper aims to initiate a discussion on inequities in digital healthcare, address current challenges, and consider future directions by elaborating on conceptual, ethical, evidence-informed, and methodological issues linked to inequities in digital healthcare. Specifically, this paper discusses why inequities in digital healthcare in a Danish context need increased attention, how health equity is embedded in Danish legislation and how it can be approached from an ethical perspective. The central focus revolves around the essential principles of empowerment, emancipation, and equity, which are being highlighted to emphasise that the digitalisation of healthcare should actively work towards preventing and avoiding the perpetuation of healthcare inequalities. The paper concludes by discussing future directions for ensuring a more sustainable, robust, and equitable digital healthcare system.

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.

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.

A dialogue-based Web application enhances personalized access to healthcare professionals--an intervention study.

BACKGROUND: In today's short stay hospital settings the contact time for patients is reduced. However, it seems to be more important for the patients that the healthcare professionals are easy to get in contact with during the whole course of treatment, and to have the opportunity to exchange information, as a basis for obtaining individualized information and support. Therefore, the aim was to explore the ability of a dialogue-based application to contribute to accessibility of the healthcare professionals and exchangeability of information. METHOD: An application for online written and asynchronous contacts was developed, implemented in clinical practice, and evaluated. The qualitative effect of the online contact was explored using a Web-based survey comprised of open-ended questions. RESULTS: Patients valued the online contacts and experienced feelings of partnership in dialogue, in a flexible and calm environment, which supported their ability to be active partners and feelings of freedom and security. CONCLUSION: The online asynchronous written environment can contribute to accessibility and exchangeability, and add new possibilities for dialogues from which the patients can benefit. The individualized information obtained via online contact empowers the patients. The Internet-based contacts are a way to differentiate and expand the possibilities for contacts outside the few scheduled face-to-face hospital contacts.