Health informatics – Sabine Koch's group

Our research focuses on clinical informatics in the areas Patient Centred Information Systems, Decision support and Decision making.

HI Conversations - our seminar series
Part of the Department of Learning, Informatics, Management and Ethics
stethoscope on computer

About us

The research group Health Informatics within the Health Informatics Centre (HIC), performs research in the areas of clinical decision making, integrated patient-centred information systems for collaborative care and patient e-services with special focus on usability.

Our aim is to perform needs driven research and to enhance clinical practice through informatics, delivering new evidence-based knowledge into patient care, prevention and self-management.

We systematically use knowledge about care processes, information flows in health and social care, patients’ information and communication needs, usability and health informatics standards to develop new methods and tools. These are evaluated to create new knowledge about how to best design and implement eHealth to create benefits for both patients and healthcare professionals.

We apply a sociotechnical approach, combining technical and methodological research with research on how implementation and use of eHealth affects roles, relationships and tasks for patients and healthcare professionals.

Within the HIC research group we have the teams

Publications

All publications from group members

Staff and contact

Group leader

All members of the group

Projects

COVID-X

The Health Informatics Centre (HIC) and the Unit for Bioentrepreneurship (UBE) at the Department of LIME, have been granted an EU Innovation Action Grant for the project COVID-X, which aims to contribute to the public health preparedness and response in the context of the ongoing pandemic of COVID-19 and to ensure the availability of critical technologies and tools.

The project COVID-X has been granted an EU Innovation Action Grant in the SC1-PHE-CORONAVIRUS-2020 strategic call "Medical technologies, Digital tools and Artificial Intelligence (AI) analytics to improve surveillance and care at high Technology Readiness Levels (TRL)".

The researchers at LIME will contribute to the project with CLEOS, a knowledge-based decision support system where the patient interacts directly with the software through a tablet or a computer. The CLEOS system allows the collection of patient symptoms and medical history and summarises and analyses the results as well as providing differential diagnostic suggestions to the responsible physician.

Official website

Data vs Covid-19: GAME ON

News on the project

New EU innovation action grant for research project COVID-X 3 September 2020

COVID-X is the project of the month 7 April 2021

COVID-X: 16 AI projects selected  21 May 2021

Principal Investigators

Carl Johan Sundberg, David Zakim

Project members

Sabine Koch, Lena Hanson, Rebecka Skarstam, Magnus Boman, Sokratis Nifakos (application coordinator at KI)

Linked Open Data in the Biomedical Information Area

It appears that the availability of open data would increase evidence of the results of biomedical research, and consequently, of clinical practice. The "Linking Open Data" community (https://lod-cloud.net/) aims at publishing open data sets on the Web, semantically connecting data items belonging to different data sources. The aim of this project is to investigate the current stage of “Linked Open Data” within Biomedical Information area, mainly by reviewing literature.

Project leader

Stefano Bonacina

Publications

Bonacina S. Linked Open Data in the Biomedical Information Area: A Keywords Analysis. Stud Health Technol Inform. 2019;264():1429-1430. doi: 10.3233/SHTI190468.

Bonacina S. Linked open data in health and clinical care. A review of the literature. European Journal for Biomedical Informatics (Praha). 2016;12(2):en2-en11. ISSN: 1801-5603.

Nordic eHealth Research Network

The Nordic eHealth Research Network (NeRN) was set on 15.02.2012 by the Nordic Council of Ministers as a subgroup for Nordic Council of Ministers eHealth group. The group collaborates with the eHealth indicator task forces. 

The group searches and develops common Nordic indicators for eHealth functionalities and services and tests them to produce Nordic eHealth benchmark data for use by national and international policy makers and scientific communities to support development of Nordic welfare. 

Since 2012 the group has made several publications whereof four major official reports:

Nordic eHealth indicators: organisation of research, first results and plan for the future.
Hyppönen H, Faxvaag A, Gilstad H, Hardardottir GA, Jerlvall L, Kangas M, Koch S, Nøhr C, Pehrsson T, Reponen J, Walldius Å, Vimarlund V Tema Nord 2013:522

Nordic eHealth Benchmarking - Status 2014. 
Hyppönen H, Kangas M, Reponen J, Nøhr C, Villumsen S, Koch S, Hardardottir GA, Gilstad H, Jerlvall L, Pehrsson T, Faxvaag A, Andreassen H, Brattheim B, Vimarlund V, Kaipio J
TemaNord 2015:539, Nordic Council of Ministers, Stockholm, Denmark. Norden, http://dx.doi.org/10.6027/TN2018-539

Nordic eHealth Benchmarking - From piloting towards established practice
Hyppönen H, Koch S, Faxvaag A, Gilstad H, Nøhr C, Hardardottir GA, Andreassen H, Bertelsen P, Kangas M, Reponen J, Villumsen S, Vimarlund V
Nordic Council of Ministers, http://dx.doi.org/10.6027/TN2017-528

Nordic eHealth Benchmarking – Towards evidence informed policies.
Nøhr C, Faxvaag A, Tsai CH, Audur Hardardottir G, Hyppönen H, Andreassen HK, Gilstad H, Jónsson H, Reponen J, Kaipio J, Voigt Øvlisen M, Kangas M, Bertelsen P, Koch S, Villumsen S, Schmidt T, Vehko T, Vimarlund V 
Tema Nord 2020:505

Contact at HIC

Sabine Koch

TERMINET

TERMINET is a three-year research and innovation project funded under Horizon2020 by the European Union, ending at the end of 2023. The project has been prolonged until March 2024.

The vision of TERMINET is to provide a novel next generation reference architecture based on cutting-edge technologies such as SDN, multipleaccess edge computing, and virtualisation for next generation IoT, while introducing new, intelligent IoT devices for low-latency, market-oriented use cases.

TERMINET’s primary intention is to bring (more efficient and accurate) decisions to the point of interest to better serve the final user targeting at applying distributed AI at the edge by using accelerated hardware and sophisticated software to support local AI model training using federated learning. Our solution aspires to reduce the complexity of the connecting vast number of heterogeneous devices through a flexible SDNenabled middleware layer.

It also aims to design, develop, and integrate novel, intelligent IoT devices such as smart glasses, haptic devices, energy harvesting modules, smart animal monitoring collars, AR/VR environments, and autonomous drones, to support new market-oriented use cases. Great expectation of the proposal is to foster AR/VR contextual computing by demonstrating applicable results in realistic use cases by using cutting-edge IoT-enabled AR/VR applications.

By designing and implementing an IoT-driven decentralised and distributed blockchain framework within manufacturing, TERMINET aims to support maintenance and supply chain optimisation. Our solution intends to apply a vertical security by design methodology by meeting the privacy-preserving and trust requirements of the NG-IoT architecture.

To foster standardization activities for the IoT ecosystem, TERMINET will provide novel disruptive business models. For the evaluation of its wide applicability, TERMINET will validate and demonstrate six proof-of-concept, realistic use cases in compelling IoT domains such as the energy, smart buildings, smart farming, healthcare, and manufacturing.

Using TERMINET to accelerate medical training

In the TERMINET project, Karolinska Institutet (KI) participates via the Health Informatics Centre (HIC) as a use case partner, together with the Swedish SME Alteruna. Alteruna develops training simulators in virtual reality (VR) for surgery and medical treatments targeting both teams and individuals.  Their solution supports mobile VR-sets and hand interaction through their own semi-physical middleware solution and enables multiplayer scenarios. Thereby, it allows the integration, not only of the simulators, but also of multiplayer capabilities into the TERMINET architecture.

The use case led by KI and Alteruna will support two of the key technologies of the TERMINET project.

Federated learning for gesture recognition: Firstly, we will adapt a federated learning framework to the gesture recognition solution of the semi-physical hand interaction. The ”weights" of the individual (local) training sessions will be uploaded to a central server and processed there. The new version of the hand interaction algorithm will then be pushed out to the clients.

Edge node computing to render video streams: The other key technology is edge node computing. We will make use of the computing power of the local edge nodes to reduce network latency. It will be especially important for our use case, where we will use video streaming instead of web applications and transitional data only. To render the video stream in the cloud, instead of from the VR device, and to render it locally in the edge node, will assumedly reduce network latency. The video stream will be interactive in the sense that the web browser user will interact in the VR-session by using the web RTC protocol.

TERMINET Wins Strategic Liaisons Award

TERMINET has been honored with the prestigious Strategic Liaisons award for Maturity of Results, Presentation, and Exploitation of Outcomes at the EUCloudEdgeIoT Open Continuum Conference. This significant achievement highlights the exceptional work and groundbreaking advancements of the TERMINET project, showcasing its contributions to the next generation of IoT technologies. June 2024

Project coordinator

University of Macedonia, Greece

Contacts at HIC

Sabine Koch, Sokratis Nifakos, Natalia Stathakarou

X-eHealth

X-eHealth is a Coordination and Supporting Action funded under Horizon2020 by the European Union, ending in Autumn 2022. stands herein for a project of strategic relevance for tomorrow’s European eHealth Union. The underlying idea of this project is to develop the basis for a workable, interoperable, secure and cross border Electronic Health Record exchange Format in order to lay the foundation for the advance of eHealth sector while using the 3 pillars put forward by the EC as reference.

Aimed at promoting a faster and sustainable EU digital transformation, this Cooperative and Support Action is made up of 8 Work Package in which 4 exclusively focus on technical-functional activities (WP4 to WP7). From Generic Aspects to System Architecture and Integration, passing by Functional and Technical Specifications, X-eHealth objective is to move towards a uniform interoperable data-sharing format framework. In addition, to enhance EU’s public health state of play, WP1 and WP8 are responsible for implementation studies, practicality and continuity of eHealth interoperability development. On this basis and building upon the already in place Patient Summary, X-eHealth purpose is to develop the foundations for a common framework for medical imaging, discharge letters, laboratory results and rare diseases to flow both alongside citizens care pathway and across health entities between EU Member States and Neighbour Countries. Focus on cross-border services, this consortium aims to advance an interoperable Common European Health Data Space for citizens and health providers engagement in accordance with privacy and cybersecurity regulations.

To achieve this end, X-eHealth gathers 36 consortium partners plus 5 collaborative partners and 6 eHealth skilled experts, eager to develop the abovementioned 4 domains, and distinguished by policy and political actors mixed with national competent authorities to indeed concretely plan, implement and maintain national eHealth infrastructures.

Project coordinator

Ministry of Health, Portugal

Contacts at HIC

Sabine Koch, Stefano Bonacina

Previous projects

Computer-interpretable guidelines through openEHR

Integration of computer-interpretable guidelines with openEHR

The focus of this research is to offer new ways of supporting clinical processes through the use of information technology that is based on reusable evidence-based data structures, models and components. In the long term this can lead to the creation of customizable e-services for patient-specific decision making in health care. In particular, computerisation of clinical practice guidelines will be explored using openEHR, a semantic technology for electronic health records.

The project is a collaboration between the KI departments LIME, MedSolna and Clinical Neuroscience as well as with the company Cambio Healthcare Systems.

Project members are Sabine Koch, LIME; Michael Fored, MedSolna; Rong Chen, Cambio Healthcare Systems and LIME; Tiago Prazeres Moreira, Clinical Neuroscience.

Publications

Retrospective checking of compliance with practice guidelines for acute stroke care: a novel experiment using openEHR's Guideline Definition Language.
Anani N, Chen R, Prazeres Moreira T, Koch S
BMC Med Inform Decis Mak 2014 May;14():39

Early Experiences from a guideline-based computerized clinical decision support for stroke prevention in atrial fibrillation.
Chen R, Valladares C, Corbal I, Anani N, Koch S
Stud Health Technol Inform 2013 ;192():244-7

OpenEHR-based representation of guideline compliance data through the example of stroke clinical practice guidelines.
Anani N, Chen R, Prazeres Moreira T, Koch S
Stud Health Technol Inform 2012 ;180():487-91

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

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

Keywords:
Health Care Service and Management, Health Policy and Services and Health Economy Human Computer Interaction (Social aspects, see 50803) Information Systems (Social aspects, see 50804) Learning Pedagogy Show all
SK
Content reviewer:
Sabine Koch
19-09-2024