Integrating Healthcare Data for Enhanced Citizen-Centred Care and Analytics

The potential of healthcare systems worldwide is expanding as new medical devices and data sources are regularly presented to healthcare providers which could be used to personalise, improve and revise treatments further. However, there is presently a large gap between the data collected, the systems that store the data, and any ability to perform big data analytics to combinations of such data. This paper suggests a novel approach to integrate data from multiple sources and formats, by providing a uniform structure to the data in a healthcare data lake with multiple zones reflecting how refined the data is: from raw to curated when ready to be consumed or used for analysis. The integration further requires solutions that can be proven to be secure, such as patient-centric data sharing agreements (smart contracts) on a blockchain, and novel privacy-preserving methods for extracting metadata from data sources, originally derived from partially-structured or from completely unstructured data. Work presented here is being developed as part of an EU project with the ultimate aim to develop solutions for integrating healthcare data for enhanced citizen-centred care and analytics across Europe.

Mobile Access and Adoption of the Swedish National Patient Portal

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.

Acceptance Study on the Usage of Health-Enabling Technologies in Therapy and Diagnostics for People with Mental Disorders

Mental disorders are widespread among the world’s population and place a high burden on both the people affected and the economy. In this area of health care and prevention major deficits can be found. Health-enabling technologies are being developed in order to provide support in the therapy and diagnostics of mental disorders. However, it is not clear whether patients are open to these technologies and what they expect from a suitable usage. The main goal of this study is to find out what opinions, hopes and fears mentally ill persons have towards a supporting treatment with health-enabling technologies. Personal interviews were conducted with psychiatric patients for that purpose. The evaluation of the interview data revealed a predominantly positive mindset of the participants. In addition to the general question according to the acceptance, requirements and expectations for the use of health-enabling technologies were acquired. In this context the concern of an invasion of privacy was exposed as a major barrier.

Integrating Patient-Generated Health Data in an Electronic Medical Record: Stakeholders’ Perspectives

Patient-generated health data (PGHD), when shared with the provider, provides potential as an approach to improve quality of care. Based on interviews and a focus group with stakeholders involved in PGHD integration in the electronic medical record (EMR), we explore the benefits, barriers and possible risks. We propose solutions to address liability concerns, such as clarifying patient and provider expectations for the analyses of PGHD and emphasize considerations for future steps, which include the need to screen PGHD for patient safety.

Digital Allergy Card: Design and Users’ Perceptions

This paper presents the design and the users’ perceptions of a Digital Allergy Card for recording, sharing and tracing information on drug allergies.

Do You Know Who Is Talking to Your Wearable Smartband?

We study seven fitness trackers and their associated smartphone apps from a wide variety of manufacturers, and record who they are talking to. Our results suggest that some of them communicate with unexpected third parties, including social networks, advertisement websites, weather services, and various external APIs. This implies that such unanticipated third-parties may glean personal information of users.

Electronic Health Record System-Related Patient Safety Incidents – How to Classify Them?

The implementation of electronic health record systems (EHRs) may cause multidimensional patient safety issues that deserve research attention. Our research aims to identify the current body of evidence on EHRs-related incident types and how incidents are classified in these studies. A literature search resulted in 44 peer-reviewed papers and six papers were included in the final analysis. The error types do not concern solely the technological features of the EHRs but may involve also non-technical aspects. Our review indicates that standard classification systems would facilitate comparisons across countries. To achieve the goal, more research evidence, testing and development of classifications are required.

Physical Activity in Cardiac Rehabilitation: Towards Citizen-Centered Digital Evidence-Based Interventions

Physical activity is a vital part of cardiac rehabilitation (CR). However, heart-healthy physical activity levels in people with cardiovascular disease drop significantly after CR. This exploratory study employs qualitative and survey methods within a co-creation approach. The aim is to understand the mechanisms of healthy behavior and habit formation in order to create a novel evidence-based (post-)rehabilitation approach that employs digital means to sustain long-term physical activity levels in people with cardiovascular disease.

Security and Privacy when Applying FAIR Principles to Genomic Information

Making data Findable, Accessible, Interoperable and Reusable (FAIR) is a good approach when data needs to be shared. However, security and privacy are still critical aspects. In the FAIRification process, there is a need both for de-identification of data and for license attribution. The paper analyses some of the issues related to this process when the objective is sharing genomic information. The main results are the identification of the already existing standards that could be used for this purpose and how to combine them. Nevertheless, the area is quickly evolving and more specific standards could be specified.

Chronic Disease Self Management Using a Social Networking PHR/UHR

This viewpoint paper presents a potential solution to the “information islands” that are holding back PHR/UHR from becoming truly effective diagnostic information care management tools for patients especially those who suffer from chronic diseases. The solution involves integrating patient portal with a diagnostic data interface layer to create a single access point for caregivers and patients.