Previous research projects at HIC

CrowdHEALTH

CrowdHEALTH is an international research project partially funded by the Horizon 2020 Programme of the European Commission that intends to integrate high volumes health-related heterogeneous data from multiple sources with the aim of supporting policy making decisions.

CrowdHEALTH is delivering a secure ICT platform that seamlessly integrates Big Data technologies, providing Data as a Service (DaaS) and a Data Analysis Toolkit. This platform intends to collect and aggregate high volumes data from multiple information sources in different regions and institutions in Europe.

Data governance mechanisms ensure cross-sector and multi-actor information exchange, paying attention not only to the quality, trustworthiness and reliability of the information, but also to privacy and regulatory aspects. Innovative visualization and simulation techniques are being implemented to present data in a comprehensive and meaningful way, so as to allow interpretation and analysis for the creation of health policies.

CrowdHEALTH also proposes the evolution of patient health records (PHR) towards the so-called Holistic Health Records (HHRs) to include additional health determinant data, such as sensors collected data, lifestyle, nutrition, etc.

HHRs will be also further enriched to become “Social HHRs”; the idea is to capture the clinical, social and human context of the population segmentation and as a result the collective knowledge relating to different factors (e.g. demographics, diseases, lifestyle choices, nutrition, etc.).

Contact at HIC

Sokratis Nifakos

CUREX

CUREX is a three-year research and innovation project funded under Horizon2020 by the European Union, ending at the end of 2021.

The vision of CUREX is to safeguard patient privacy and increase their trust in the currently vulnerable critical healthcare information infrastructures, especially in cases where data is exchanged among healthcare stakeholders within any business, operational and systemic cross-border environment.

By leveraging novel methods on ontological health data modelling, vulnerability discovery, threat intelligence, cybersecurity, and privacy risk assessment methodologies, and state-of-the art in blockchain technologies for health data, CUREX aims at enabling secure and authorized sensitive health data exchange. CUREX will achieve its objectives by empowering healthcare institutions to efficiently, accurately and effectively assess and address their cybersecurity and privacy risks associated with health data exchange and enhance their cybersecurity and privacy awareness among the organization personnel. By capitalizing on technologies developed for the well-known H2020 project MyHealthMyData (MHMD), CUREX will offer a secure-by-design business network based on the MHMD blockchain technologies and software that will provide accountability and auditability functionalities that will increase trust among hospitals and care centres.

CUREX will provide GDPR-compliant tools and applications targeted towards healthcare professionals and individuals, offering a secure and private-by-design environment to access and exchange data. Compliance with GDPR will be achieved in various ways including subject consent, access control, and purpose of data use, time, and storage limitation.

Using CUREX’s outcomes, EU citizens will experience the same level of healthcare services in EU member states with confidence that their data is protected from a wide variety of commodity as well as advanced cybersecurity and privacy threats.

Project Coordinator

University of Piraeus, Systems Security Laboratory, Department of Digital Systems

Partners from Karolinska Institutet

Department of Neurobiology, Care Sciences and Society

Department of Learning, Informatics, Management and Ethics

Contacts at HIC

Sabine Koch, Sokratis Nifakos, Stefano Bonacina

EHR4SA

Electronic Health Records for South Africa (EHR4SA) is a three-year research project funded by FORTE and the South African Medical Research Council (SAMRC), ending autumn 2020.

The rationale for the project is that South Africa is moving towards a National Health Insurance (NHI) strategy that will improve the access and quality of health care for all citizens. However, the NHI will need patient data to be accessible to all health care providers as patients will be able to access both private and public health care services.

Currently, there is no electronic method to keep track of patient records in the public sector, while monitoring and evaluation of primary health care services is also done in a manual fashion. The eHealth strategy further identifies key challenges as limited capacity or capabilities within the primary health care sector to implement a national eHealth strategy; differing levels of eHealth maturity across and within provinces and large number of systems between which there is little or no interoperability and communication.

Sweden has had an eHealth strategy since 2005 and is at the forefront when it comes to design and develop of eHealth, both for healthcare professionals and for patients. In Sweden, most primary healthcare centres and hospitals make use of electronic health records, 98% of all prescriptions are made electronically and patients have access to their medical data through a patient-accessible EHR. However, this does not mean that all care professionals and patients are completely happy with their EHR systems and interoperability is still a challenge.

The aim of this research project is to evaluate how the policy implementation of the eHealth strategy can be supported through EHRs and to explore the infrastructure and requirements necessary for successful implementation of EHR systems.

Project leader

Sabine Koch

Collaborating partners

Liezel Cilliers, University of Fort Hare, South Africa 
Graham Wright, Rhodes University, South Africa
Stephen Flowerday, Rhodes University, South Africa

Health Innovation Platform

Health Innovation Platform (HIP) is a three-year research project funded by VINNOVA, ending autumn 2020.

The goal of the project is to complete the development of the Healthcare Innovation Platform (HIP.se) – a framework that provides tools and frameworks for professionals developing new e-health services and retrieve information from the county council's medical record systems.

Why? Because development of new health care systems has been the preserve of a few large players that have been able to afford this! HIP.se deliver tens of thousands of hours of work that each individual development would otherwise have to perform themselves. HIP gives both large and small players access to quality-assured and certified code. Then they can quickly develop new solutions at a fraction of what they would otherwise cost.

Both citizens and health care providers benefit from this and, furthermore, both the concept and the new services are new export opportunities. But HIP.se is not packaged in such a way that developers can use it without the support of HIP's development team. The project will develop the platform so it can be used independently and launched both nationally and internationally. Only then everybody get full advantage of a unique development concept.

Besides development and testing of the HIP platform and related services, the project deliveries include HIP Forum - a place for meeting, learning and communication in order to deepen the understanding of the concept. But only delivering a portal and forums will not be enough. The project will therefore produce content in the form of new e-services and also be followed up via models and pilots to verify both usability as well as how the concept affects development time and costs.

Project leader

Nina Sellberg

Heart Rate Variability Biofeedback Game

Reduced heart rate variability (HRV) is an indicator of a malfunctioning autonomic nervous system, which could be a cause or consequence of disease.
Resonant frequency breathing is a potential non-invasive means of intervention for improving the balance of the autonomic nervous system and increasing HRV. However, such breathing exercises are regarded as boring and monotonous tasks. The use of gaming elements (gamification) or even the creation of a full gaming experience is a well-recognised method for achieving higher motivation and engagement in various tasks. However, there is limited documented knowledge on how to design a game for health purposes, e.g., breathing exercises. In particular, the influence of additional interactive elements on the main course of training has not yet been explored.

In a collaboration with the School of Technology and Health, Royal Institute of Technology, we evaluated the satisfaction levels achieved using different game elements and how disruptive they were to the main task, i.e., paced breathing training. An Android flight game was developed with three game modes that differ in the degrees of multitasking they require. Design, development and evaluation were conducted using a user-centred approach, including context analysis, the design of game principle mock-ups, the selection of game principles through a survey, the design of the game mechanics and GUI mock-up, icon testing and the performance of a summative study through user questionnaires and interviews. A summative evaluation of the developed game was performed with healthy participants (ages 40-67) in a controlled setting.

The results confirm the potential of video games for motivating players to engage in HRV biofeedback training. The highest training performance on the first try was achieved through pure visualisation rather than in a multitasking mode. However, players had higher motivation to play the more challenging game and were more interested in long-term engagement. This project will be followed by recruiting people suffering from depression and stress to evaluate the games.

Contact person

Aboozar Eghdam

IntegrIT

The goal of IntegrIT is to develop an infrastructure for patient-oriented clinical research that integrates data collection from patient records, research templates and patients' self-reporting. The aim is to promote clinical research in the regular care while reducing administrative time for both researchers and patients.

Lead patients

Lead patients - patients who know, can and do more and a health care system that can meet their needs.

This Vinnova project is based on the previous project 'Chronic knowledge' and we now want to continue and create a center for lead patients, where training and education, regardless of diagnosis, will be delivered.

A lead patient is a patient (or informal care giver) who develops strategies and methods to maximize their 'feel-well-time', while living with a life-altering illness. We believe that self-care education and access to the right tools will result in more lead patients. The center will also contribute to increasing the interactions between patients and other stakeholders.

The project partners are geographically and organizationally diverse and include patient organizations, academia, the public sector, private healthcare providers and corporations. Together we represent a broad field of competences and a clear focus on the key issue of the project, which is to support patients' self-care and participation in healthcare improvement work. Our solution will contribute to radically improving the way healthcare meets the competences and expectations of patients in self-care and improvement work. Patients who are able to assume a greater responsibility for their own health will enable healthcare resources to be reallocated and used for those who need more help.

The potential is considerable, both regarding healthcare cost savings, new models for healthcare delivery and new business opportunities.

Contact person

Sara Riggare

MobEVAL – evaluation of mobile ICT in homecare

The introduction of electronic health records (EHRs), clinical decision support systems (CDSS) and other IT systems in primary health care have simplified the daily work but also resulted in increased time for administration. Yet, although IT has been used in health care for decades we still only use a fraction of the potential of modern information technologies. Employees in primary health care still depend on desktop computers in order to carry out documentation and other care related administrative work, despite a large part of primary care work is performed in the patient's home. Mobile EHRs have been shown to improve the documentation quality, yet knowledge about current adoption in the Swedish context and the impact of such tools remain low.

The purpose of this research project is to explore how the implementation of mobile IT-systems in home care affects the work of health care professionals. In order to achieve this aim, we will:

1. explore the current state of implementation of mobile IT-systems in home care, and
2. examine how the implementation of new mobile IT-systems affects healthcare professionals’ work situation, specifically focusing on administration time, working environment (mainly in terms of experienced stress) and healthcare professionals perception of patient safety in relation to documentation, access to information and communication tools in mobile work situations.

There are many different evaluation methods and tools to be applied, yet guidance on what approaches are most suitable to apply and what factors are most important to evaluate is limited. We believe that this has a negative impact on the number of evaluation studies performed of mobile IT-systems in homecare and their quality. In parallel with the evaluation study, we will therefore also develop a framework for evaluation of mobile IT-systems in healthcare, with the primary user group healthcare professionals.

Participating researchers

• Maria Hägglund, HIC, KI
• Lovisa Hagstedt Jäderlund, HIC, KI och Tiohundra
• Magnus Peterson

My Care Pathways

The project My Care Pathways strives towards the vision to enable citizens to track their health by providing them online access to past history, current state and prospective future events regarding their personal care pathways.

My Care Plan

My care plan is a study on supporting self-care and collaboration in stroke care through information and communication technology. The main purpose of our research is to examine how health information systems (in this context 'My care plan') used by patients with chronic or long-term illnesses should be designed to improve collaboration, patient participation, autonomy and self-care. In this project we will therefore develop a prototype 'My care plan' that will be a tool with a focus on care and rehabilitation planning as a means to improve collaboration between patients and healthcare staff and a tool to enable long-term reporting and monitoring of individual's health status.

This project is financed by the Health Informatics Centre (HIC). Project time: 2011-2016.

Contact person

Maria Hägglund

National study of eHealth in ambulance care

A questionnaire study to describe how information and communication technology (ICT) or eHealth is used in ambulance care is performed during 2016. The questionnaire was sent out to ambulance nurses, with the purpose to explore how eHealth supports the nurses information needs during the different phases of the ambulance workflow. The study was performed on behalf of the Swedish eHealth Agency (eHälsomyndigheten) in collaboration between the Swedish Association of Health Professionals (Vårdförbundet), Riksföreningen för ambulanssjuksköterskor and Karolinska Institutet.

Vårdförbundet coordinates the work and distributes the questionnaires to all ambulance nurses in their membership registry. Researchers from the Health Informatics Centre and Sektionen för Omvårdnad at Karolinska institutet are responsible to analyzing the data and reporting the results.

Read more about it at ehälsomyndigheten (in Swedish)

Read more about it at Dagens Medicin (in Swedish)

Participating researchers from HIC

Maria Hägglund

Therese Scott Duncan

Publication

Collaborative interaction points in post-discharge stroke care.
Davoody N, Koch S, Krakau I, Hägglund M
Int J Integr Care 2014 Oct;14():e032

New SkyCare

New SkyCare is a three-year EIT Health project funded under Horizon2020 by the European Union, ending at the end of 2021.

SkyCare is the first European initiative to establish a virtual hospital that will be able to service patients independently of their home country.

The initial focus will be on patients in the Netherlands and Sweden, afflicted by diabetes type II and chronic heart failure.

The goal of the initiative is to create a scalable Medical Service Centre, which can be expanded to other countries and can be used for other medical conditions. This is achieved by a flexible and open IT architecture with three unique features:

It connects existing eHealth tools and patients to an open central scalable platform.

It adds new algorithms to analyse the data.

It monitors the data via a new 24/7 Medical Service Centre, which contacts patients and healthcare providers when necessary, and enables research.

Project coordinator

Zilveren Kruis Achmea, The Netherlands

Contact at HIC

Sabine Koch

PACESS

Patient-centred assessment of patients' online access to electronic health records (PACESS) is a 3 year research project financed by FORTE, starting in 2017. In Sweden, we are now in a unique position to explore how current eHealth trends can impact on, and even transform healthcare. In this research, we specifically want to explore the impact of patient accessible electronic health records (EHRs) on the areas of health- and self-care, and further explore how eHealth can be used to empower patients to become active participants in both their own care and in the transformation of healthcare. Patient accessible EHRs (PAEHRs) are often heralded as important means for patient empowerment - but we aim to further explore if and how this empowerment takes place. One hypothesis is that only patients who are already empowered use the service, leaving other patients without the potential benefits. Therefore we will explore the benefit of having online access to EHRs and how the design and use of these eHealth services can be improved to empower more people.

In order to harness the powers of eHealth, we need a better understanding of how roles, relationships and organizational structures are affected on micro, meso and macro levels through the introduction of such eHealth services. We also need to understand how the emergence of e-patients affects other roles and impacts on the transformation of healthcare. Therefore the main objective of this research is to explore the impact of information access and innovative eHealth on patients and healthcare.

Two work packages are planned;

1. Long-term evaluation of the already implemented eHealth service in Swedish healthcare.
2. Co-creation of innovative e-services that empower citizens.

Throughout the project we will establish a theoretical framework to explain how implementation of eHealth services impact different patient groups and healthcare on different levels of the health system. Furthermore, patient-centred quality indicators will be created to facilitate joint assessments of deployment and use of PAEHRs.

Project leader

Maria Hägglund, Karolinska Institutet

Collaborating researcher

Isabella Scandurra, Örebro University

Supporting persons with mild acquired cognitive impairments through e-services

The objective of this research is to present an overview of the mild/moderate acquired cognitive impairment (MACI) persons’ experience with e-services such as social media, mobile and assistive technology.

This project started with an exploratory study exploring the current assistive information and communication technology (ICT) as a systematic review of the existing literature about available ICT tools for MACI patients using 8 different medical, scientific, engineering, and physiotherapy library databases. The functionality of tools was analyzed using an analytical framework based on the International Classification of Functioning, Disability and Health (ICF). The research was followed by a postal self-administered questionnaire, asking a total of 600 members of a patient organization (Hjärnkraft) regarding the persons’ use of e-services and social media in addition to their cognitive failures level. The project will be followed by an evaluation of a public Facebook group established for people with fatigue after an injury to the brain in addition to a few focus groups meeting with a small number of persons with MACI. So far, the results of different studies of this project showed a lack of special ICT tools for supporting people with MACI in addition to what available services/tools have been used by them frequently (on their own). The results also indicated that communication is the most important aspect of e-services for them.

Contact person

Aboozar Eghdam

Publication

Information and communication technology to support self-management of patients with mild acquired cognitive impairments: systematic review.
Eghdam A, Scholl J, Bartfai A, Koch S
J. Med. Internet Res. 2012 Nov;14(6):e159