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.

Patient-Centered Development of a Digital Care Pathway for Arrhythmia Patients

Citizens are ready and willing to use various kinds of e-health services and Web-based portals. The purpose of this study was to describe the experiences of patients who underwent an arrhythmia procedure of the guidance they received as well as their needs and expectations for a future digital care path. The goal for the future is to utilize the results in other patient-centered digital service development activities. The research material was collected in a two-part thematic interview with patients who underwent an electrophysiology examination and supraventricular tachycardia catheter ablation procedure (n=7) or ablation treatment for atrial fibrillation (n=4). The preliminary digital care path was modified based on the results. The arrhythmia patient’s digital care path was tested in a workshop using a test group consisting of patients (n=3) and nursing staff (n=6). As a result, a digital care pathway for arrhythmia patients was completed.

Measures of Decision Aid Quality Are Preference-Sensitive and Interest-Conflicted – 2: Empirical Measures

Empirical measures of ‘decision aid quality’, like normative ones, are of a formative construct and therefore embody interest-conflicted preferences in their criteria selection and weighting. The preferences of the International Patient Decision Aid Standards consortium distinguish the quality of the decision-making process and the quality of the choice that is made ‘(i.e., decision quality)’. The Decision Conflict Scale features heavily in their profile measure of the former and Decision Quality Instruments (DQIs), have been developed by members of the consortium to measure the latter. We confirm that both of these, and other components, like the higher-level measures, are preference-sensitive and interest-conflicted. Non-financial interest-conflicted preferences are endemic in healthcare research, policy-making, and practice. That they are inevitable means the main problem lies in the denial of this and attitude to and behaviour towards alternatives, equally interest-conflicted.

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.