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  • 1. Bärkås, Annika
    et al.
    Scandurra, Isabella
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Analysis of Voluntary User Feedback of the Swedish National PAEHR Service.2019In: MEDINFO 2019: Health and Wellbeing e-Networks for All: Proceedings of the 17th World Congress on Medical and Health Informatics, 2019, Vol. 264, p. 1126-1130Conference paper (Refereed)
    Abstract [en]

    "Journalen" is a patient accessible electronic health record (PAEHR) and the national eHealth service for Sweden's citizens to gain access to their EHR. The Swedish national eHealth organization Inera, responsible for Journalen, created an inbox to receive voluntary user feedback about Journalen in order to improve the service from the user perspective. Based on voluntary user feedback via email. This study explored patients' experiences of using the national eHealth service and identified pros and cons. A mixed method content analysis was performed. In total, 1084 emails from 2016-2017 have been analyzed. 9 categories were identified, the most frequent ones related to questions about why some information was not accessible (due to regional differencies), feedback (including only positive or negative comments as well as constructive improvement suggestions), and emails about errors that user found in their record. These data can be successfully used to continuously improve an already implemented eHealth service.

  • 2. Davoody, Nadia
    et al.
    Hägglund, Maria
    Care Professionals' Perceived Usefulness Of A Rehabilitation Ehealth Service In Stroke Care.2015Conference paper (Refereed)
    Abstract [en]

    Despite many attempts to support stroke patients, there is still room for improvement. The aim of this study is to gain insight into care professionals' perceived usefulness of an online care and rehabilitation planning tool. A functional prototype was developed and presented to a neurology team in a primary care centre in Stockholm. Three focus group meetings were conducted. The data were analysed based on the unified theory of acceptance and use of technology. The results indicate that the care professionals were positive towards the tool and described potential usefulness such as ease of understanding the rehabilitation process and support for collaboration among care providers and also cooperation between the patient and the team. They also identified challenges such as time limitation in daily care.

  • 3. Davoody, Nadia
    et al.
    Hägglund, Maria
    Care Professionals' Perceived Usefulness of eHealth for Post-Discharge Stroke Patients.2016Conference paper (Refereed)
    Abstract [en]

    Despite many attempts to provide appropriate tools for supporting stroke patients in their care and rehabilitation processes, there is still room for improvement. We propose an online care and rehabilitation planning tool as a potential eHealth service for stroke patients. The aim is to study the care professionals' perceived usefulness of the planning tool. We developed and presented a functional prototype to a neurology team in Stockholm. Three focus groups were performed with the care professionals in the team and the data were analysed based on the unified theory of acceptance and use of technology. Although care professionals mentioned challenges such as time limitation for using the tool and issues related to the responsibility of the system, they were positive towards the tool and its potential usefulness in ease of understanding the rehabilitation process and support for collaboration.

  • 4. Davoody, Nadia
    et al.
    Koch, Sabine
    Krakau, Ingvar
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform: a case study2019In: BMC Medical Informatics and Decision Making, ISSN 1472-6947, E-ISSN 1472-6947, Vol. 19, no 1, article id 95Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    Patients and citizens need access to their health information to get a retrospective as well as a prospective view on their care and rehabilitation processes. However, patients' health information is stored in several health information systems and interoperability problems often hamper accessibility. In Sweden a national health information exchange (HIE) platform has been developed that enables information exchange between different health information systems. The aim of this study is to explore the opportunities and limitations of accessing and interacting with important health information through the Swedish national HIE platform.

    METHODS:

    A single case study approach was used for this study as an in-depth understanding of the subject was needed. A fictive patient case with a pseudo-name was created based on an interview with a stroke coordinator in Stockholm County. Information access through the national health information exchange platform and available service contracts and application programming interfaces were studied using different scenarios.

    RESULTS:

    Based on the scenarios created in this study, patients would be able to access some health related information from their electronic health records using the national health information exchange platform. However, there is necessary information which is not retrievable as it is either stored in electronic health records and eHealth services which are not connected to the national health information exchange platform or there is no service contract developed for these types of information. In addition, patients are not able to share information with healthcare professionals.

    CONCLUSION:

    The national Swedish HIE platform provides the building blocks needed to allow patients online access to their health information in a fragmented and distributed health system. However, more complex interaction scenarios allowing patients to communicate with their health care providers or to update their health related information are not yet supported. Therefore it is of great importance to involve patients throughout the design and evaluation of eHealth services on both national and local levels to ensure that their needs for interoperability and information exchange are met.

  • 5. Davoody, Nadia
    et al.
    Koch, Sabine
    Krakau, Ingvar
    Hägglund, Maria
    Collaborative interaction points in post-discharge stroke care.2014In: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 14, article id e032Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Lack of appropriate electronic tools for supporting patient involvement and collaboration with care professionals is a problem in health care.

    METHODS: Care and rehabilitation processes of post-discharge stroke patients were analysed using the concept of interaction points where patients, next-of-kin and care professionals interact and exchange information. Thirteen interviews with care professionals and five non-participatory observations were performed. Data were analysed using content analysis and modelling of interaction points in the patient journey.

    RESULTS: Patient participation and interaction patterns vary; patients requiring home care have a passive role and next-of-kin or nurses become advocates by coordinating care on behalf of the patient, whereas patients who are able to visit primary care coordinate their own care by initiating interactions. Important categories of participation include the following: participation in care planning, in monitoring risk factors and in rehabilitation planning.

    CONCLUSIONS: Designing a supportive electronic tool requires understanding the interactions and patients' activity levels at each interaction point. A tool for patients with higher activity level should support them to coordinate their own care, whereas for a less-active patient group, the tool could focus on supporting next-of-kin and care professionals in motivating, guiding and including passive patients in their care and rehabilitation processes.

  • 6. Davoody, Nadia
    et al.
    Koch, Sabine
    Krakau, Ingvar
    Hägglund, Maria
    Post-discharge stroke patients' information needs as input to proposing patient-centred eHealth services.2016In: BMC Medical Informatics and Decision Making, ISSN 1472-6947, E-ISSN 1472-6947, Vol. 16, article id 66Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Despite the potential of eHealth services to revolutionize the way healthcare and prevention is provided many applications developed for patients fail to deliver their promise. Therefore, the aim of this study is to use patient journey mapping to explore post-discharge stroke patients' information needs to propose eHealth services that meet their needs throughout their care and rehabilitation processes.

    METHODS: Three focus groups with younger (<65 years) and older (> = 65 years) stroke patients were performed. Content analysis was used to analyse the data. Stroke patients' information needs was explored using patient journey model.

    RESULTS: Four main events (discharge from hospital, discharge from rehab clinic, coming home, and clinical encounters) and two phases (at rehab clinic, at home) have been identified in patients' post-discharge journey. The main categories identified in this study indicate that patients not only need to have access to health related information about their care and rehabilitation processes but also practical guidance through healthcare and community services. Patients also have different information needs at different events and during different phases. Potential supportive eHealth services were suggested by the researchers considering different parts of the patients' journeys.

    CONCLUSIONS: Patient journey models and qualitative analysis of patients' information needs are powerful tools that can be used to improve healthcare from a patient perspective. As patients' understanding of their illness changes over time, their need of more flexible support throughout the care and rehabilitation processes increases. To design appropriate eHealth services that meet patients' information needs, it is imperative to understand the current care and rehabilitation processes and identify patients' information needs throughout their journey.

  • 7. Davoody, Nadia
    et al.
    Koch, Sabine
    Krakau, Ingvar
    Hägglund, Maria
    Health Informatics Centre, Karolinska Institutet.
    Supporting Self-care and Collaboration in Stroke Care through Information andCommunication Technology2012In: Quality of Life through Quality of Information, 2012Conference paper (Other academic)
  • 8. Davoody, Nadia
    et al.
    Woldemariam, Yamrotsow
    Hägglund, Maria
    Health Informatics Centre, Karolinska Institutet.
    Stroke patients’ post-discharge information needs and actual information provision2014Conference paper (Other academic)
  • 9.
    Hellsten, Sofie V.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmaceutical Biosciences.
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Functional Pharmacology.
    Eriksson, Mikaela
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmaceutical Biosciences.
    Fredriksson, Robert
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmaceutical Biosciences.
    The neuronal and astrocytic protein SLC38A10 transports glutamine, glutamate, and aspartate, suggesting a role in neurotransmission2017In: FEBS Open Bio, E-ISSN 2211-5463, Vol. 7, no 6, p. 730-746Article in journal (Refereed)
    Abstract [en]

    In brain cells, glutamine transporters are vital to monitor and control the levels of glutamate and GABA. There are 11 members of the SLC38 family of amino acid transporters of which eight have been functionally characterized. Here, we report the first histological and functional characterization of the previously orphan member, SLC38A10. We used pairwise global sequence alignments to determine the sequence identity between the SLC38 family members. SLC38A10 was found to share 20-25% transmembrane sequence identity with several family members, and was predicted to have 11 transmembrane helices. SLC38A10 immunostaining was abundant in mouse brain using a custom-made anti-SLC38A10 antibody and colocalization of SLC38A10 immunoreactivity with markers for neurons and astrocytes was detected. Using Xenopus laevis oocytes overexpressing SLC38A10, we show that SLC38A10 mediates bidirectional transport of L-glutamine, L-alanine, L-glutamate, and D-aspartate, and efflux of L-serine. This profile mostly resembles system A members of the SLC38 family. In conclusion, the bidirectional transport of glutamine, glutamate, and aspartate by SLC38A10, and the immunostaining detected in neurons and astrocytes, suggest that SLC38A10 plays a role in pathways involved in neurotransmission.

  • 10.
    Huvila, Isto
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Department of ALM.
    Eriksson-Backa, Kristina
    Moll, Jonas
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction.
    Myreteg, Gunilla
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Business Studies.
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Differences in the experiences of reading medical records online: Elderly, Older and Younger Adults compared2018In: Informaatiotutkimus, ISSN 1797-9129, Vol. 37, no 3, p. 51-54Article in journal (Refereed)
  • 11.
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Functional Pharmacology.
    Characterization of Amino Acid Transporters in the Brain: Molecular and Functional Studies of Members within the Solute Carrier Families SLC38 and SLC62013Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Solute carriers (SLCs) comprise the largest group of transporters in humans and there are currently 52 SLC families. They are embedded in cellular membranes and transport numerous molecules; defects in many of the genes encoding SLCs have been connected to pathological conditions, and several SLCs are potential drug targets.

    The SLC38 family has in total eleven members in humans and they encode transporters called SNATs. In paper I and paper II, we reported molecular and functional characterization of Slc38a7 and Slc38a8, two of the previous orphan members in the family which we suggested to be named SNAT7 and SNAT8, respectively. Using in situ hybridization and immunohistochemistry, these transporters showed similar expression pattern and localized to neurons in the brain For functional characterization proteins were overexpressed in X. laevis oocytes and an Uptake Assay and electrophysiological recordings showed preferred transport of L-glutamine, L-histidine, L-alanine, L-asparagine, L-aspartate and L-arginine for SNAT7. A similar pattern was seen for SNAT8 in a slightly different order of affinities. We classified SNAT7 as a system N transporter and SNAT8 as belonging to system A, and suggests that SNAT7 and SNAT8 could play a role in the glutamine/glutamate(GABA) cycle (GGC) in the brain.

    Furthermore, we studied the vesicular B0AT3 (Slc6a17) transporter in paper III, and the sodium-coupled amino acid transporter B0AT2 (Slc6a15) in paper IV. Tissue expression studies showed similar localization of Slc6a17 and Slc6a15 mRNA using in situ hybridization and real-time PCR. In paper III, vesicular localization of B0AT2 was shown in both excitatory and inhibitory neurons. When challenging the monoaminergic system with drugs both Slc6a17 and Slc6a15 were upregulated. Suggested roles for the transporters are thereby in synaptic remodeling by regulating the availability of free amino acids used as precursors needed in neurotransmitter synthesis. Moreover, in paper IV, immunohistochemistry showed B0AT3 localization to neurons, astrocytes and epithelial cells of the choroid plexus. Leucine injections caused a smaller reduction of food intake as well as higher neuronal activation in the paraventricular hypothalamic nucleus in Slc6a15 KO mice, compared with wild type mice. This suggests B0AT2 involvement in the anorexigenic effects of leucine.

    List of papers
    1. Identification of SLC38A7 (SNAT7) Protein as a Glutamine Transporter Expressed in Neurons
    Open this publication in new window or tab >>Identification of SLC38A7 (SNAT7) Protein as a Glutamine Transporter Expressed in Neurons
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    2011 (English)In: Journal of Biological Chemistry, ISSN 0021-9258, E-ISSN 1083-351X, Vol. 286, no 23, p. 20500-20511Article in journal (Refereed) Published
    Abstract [en]

    The SLC38 family of transporters has in total 11 members in humans and they encode amino acid transporters called sodium-coupled amino acid transporters (SNAT). To date, five SNATs have been characterized and functionally subdivided into systems A (SLC38A1, SLC38A2, and SLC38A4) and N (SLC38A3 and SLC38A5) showing the highest transport for glutamine and alanine. Here we present identification of a novel glutamine transporter encoded by the Slc38a7 gene, which we propose should be named SNAT7. This transporter has L-glutamine as the preferred substrate but also transports other amino acids with polar side chains, as well as L-histidine and L-alanine. The expression pattern and substrate profile for SLC38A7 shows highest similarity to the known system N transporters. Therefore, we propose that SLC38A7 is a novel member of this system. We used in situ hybridization and immunohistochemistry with a custom-made antibody to show that SLC38A7 is expressed in all neurons, but not in astrocytes, in the mouse brain. SLC38A7 is unique in being the first system N transporter expressed in GABAergic and also other neurons. The preferred substrate and axonal localization of SLC38A7 close to the synaptic cleft indicates that SLC38A7 could have an important function for the reuptake and recycling of glutamate.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:uu:diva-155238 (URN)10.1074/jbc.M110.162404 (DOI)000291267600037 ()
    Available from: 2011-06-21 Created: 2011-06-20 Last updated: 2017-12-11Bibliographically approved
    2. Transport of L-glutamine, L-alanine and L-histidine by the neuron-specific Slc38a8 (SNAT8) in CNS.: SNAT8 is a neuronal glutamine transporter.
    Open this publication in new window or tab >>Transport of L-glutamine, L-alanine and L-histidine by the neuron-specific Slc38a8 (SNAT8) in CNS.: SNAT8 is a neuronal glutamine transporter.
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    (English)In: Article in journal (Refereed) Submitted
    Keywords
    Glutamine/glutamate(GABA) cycle, Glutamine transporter, SLC38A8, SNAT8, Xenopus laevis oocytes
    National Category
    Cell and Molecular Biology
    Research subject
    Neuroscience
    Identifiers
    urn:nbn:se:uu:diva-212592 (URN)
    Funder
    Swedish Society for Medical Research (SSMF)Swedish Research Council
    Available from: 2013-12-12 Created: 2013-12-12 Last updated: 2018-10-29
    3. Characterization of the transporterB0AT3 (Slc6a17) in the rodent central nervous system
    Open this publication in new window or tab >>Characterization of the transporterB0AT3 (Slc6a17) in the rodent central nervous system
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    2013 (English)In: BMC neuroscience (Online), ISSN 1471-2202, E-ISSN 1471-2202, Vol. 14, p. 54-Article in journal (Refereed) Published
    Abstract [en]

    Background: The vesicular B(0)AT3 transporter (SLC6A17), one of the members of the SLC6 family, is a transporter for neutral amino acids and is exclusively expressed in brain. Here we provide a comprehensive expression profile of B(0)AT3 in mouse brain using in situ hybridization and immunohistochemistry. Results: We confirmed previous expression data from rat brain and used a novel custom made antibody to obtain detailed co-labelling with several cell type specific markers. B(0)AT3 was highly expressed in both inhibitory and excitatory neurons. The B(0)AT3 expression was highly overlapping with those of vesicular glutamate transporter 2 (VGLUT2) and vesicular glutamate transporter 1 (VGLUT1). We also show here that Slc6a17mRNA is up-regulated in animals subjected to short term food deprivation as well as animals treated with the serotonin reuptake inhibitor fluoxetine and the dopamine/noradrenaline reuptake inhibitor bupropion. Conclusions: This suggests that the B(0)AT3 transporter have a role in regulation of monoaminergic as well as glutamatergic synapses.

    National Category
    Neurosciences Pharmacology and Toxicology
    Identifiers
    urn:nbn:se:uu:diva-205338 (URN)10.1186/1471-2202-14-54 (DOI)000320714200001 ()
    Available from: 2013-08-16 Created: 2013-08-16 Last updated: 2018-01-11Bibliographically approved
    4. B(0)AT2 (SLC6A15) is localized to neurons and astrocytes, and is involved in mediating the effect of leucine in the brain
    Open this publication in new window or tab >>B(0)AT2 (SLC6A15) is localized to neurons and astrocytes, and is involved in mediating the effect of leucine in the brain
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    2013 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 8, no 3, p. e58651-Article in journal (Refereed) Published
    Abstract [en]

    The B(0)AT2 protein is a product of the SLC6A15 gene belonging to the SLC6 subfamily and has been shown to be a transporter of essential branched-chain amino acids. We aimed to further characterize the B(0)AT2 transporter in CNS, and to use Slc6a15 knock out (KO) mice to investigate whether B(0)AT2 is important for mediating the anorexigenic effect of leucine. We used the Slc6a15 KO mice to investigate the role of B(0)AT2 in brain in response to leucine and in particular the effect on food intake. Slc6a15 KO mice show lower reduction of food intake as well as lower neuronal activation in the ventromedial hypothalamic nucleus (VMH) in response to leucine injections compared to wild type mice. We also used RT-PCR on rat tissues, in situ hybridization and immunohistochemistry on mouse CNS tissues to document in detail the distribution of SLC6A15 on gene and protein levels. We showed that B(0)AT2 immunoreactivity is mainly neuronal, including localization in many GABAergic neurons and spinal cord motor neurons. B(0)AT2 immunoreactivity was also found in astrocytes close to ventricles, and co-localized with cytokeratin and diazepam binding inhibitor (DBI) in epithelial cells of the choroid plexus. The data suggest that B(0)AT2 play a role in leucine homeostasis in the brain.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:uu:diva-199769 (URN)10.1371/journal.pone.0058651 (DOI)000318334500110 ()23505546 (PubMedID)
    Available from: 2013-05-13 Created: 2013-05-13 Last updated: 2017-12-06Bibliographically approved
  • 12.
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    E-hälsa i hemsjukvården: ett stöd för patientsäkervård2019In: Hemsjukvård: olika perspektiv på trygg och säker vård / [ed] Mirjam Ekstedt och Maria Flink, Liber, 2019, 1Chapter in book (Other (popular science, discussion, etc.))
  • 13.
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Sharing is Caring: Integrating Health Information Systems to Support Patient-Centred Shared Homecare2009Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    In the light of an ageing society with shrinking economic resources, deinstitutionalization of elderly care is a general trend. As a result, homecare is increasing, and increasingly shared between different health and social care organizations. To provide a holistic overview about the patient care process, i.e. to be patient-centred, shared homecare needs to be integrated. This requires improved support for information sharing and cooperation between different actors, such as care professionals, patients and their relatives.

    The research objectives of this thesis are therefore to study information and communication needs for patient-centered shared homecare, to explore how integrated information and communication technology (ICT) can support information sharing, and to analyze how current standards for continuity of care and semantic interoperability meet requirements of patient-centered shared homecare.

    An action research approach, characterized by an iterative cycle, an emphasis on change and close collaboration with practitioners, patients and their relatives, was used. Studying one specific homecare setting closely, intersection points between involved actors and specific needs for information sharing were identified and described as shared information objects. An integration architecture making shared information objects available through integration of existing systems was designed and implemented. Mobile virtual health record (VHR) applications thereby enable a seamless flow of information between involved actors. These applications were tested and validated in the OLD@HOME-project. Moreover, the underlying information model for a shared care plan was mapped against current standards. Some important discrepancies were identified between these results and current standards for continuity of care, stressing the importance of evaluating standardized models against requirements of evolving healthcare contexts.

    In conclusion, this thesis gives important insights into the needs and requirements of shared homecare, enabling a shift towards patient-centered homecare through mobile access to aggregated information from current feeder systems and documentation at the point of need.

    List of papers
    1. Scenarios to capture work processes in shared homecare-From analysis to application
    Open this publication in new window or tab >>Scenarios to capture work processes in shared homecare-From analysis to application
    2010 (English)In: International Journal of Medical Informatics, ISSN 1386-5056, E-ISSN 1872-8243, Vol. 79, no 6, p. E126-E134Article in journal (Refereed) Published
    Abstract [en]

    BACKGROUND: Shared homecare is increasingly common, and in order to develop ICT that support such complex cooperative and interdisciplinary work it is crucial to obtain an understanding of work processes at the clinical level before the development is initiated. It is also crucial, but difficult, to correctly transfer this insight to the development team. METHOD: User-centered scenario building in interdisciplinary working groups is applied for capturing cooperative work routines, information demands, and other central preconditions in shared homecare. RESULTS: Use of scenarios for analysis of cooperative work and as information carrier is described via a case from the multi-disciplinary OLD@HOME project. Both current and future work scenarios were elicited. To illustrate the process of transforming scenarios into more technical descriptions (use cases), and finally into an application, examples showing the transparency in resulting use cases and in the implemented system are provided. CONCLUSION: In this case study, scenarios proved to be useful not only in initial system development phases but throughout the entire development process, improving accessibility and assessment of end user needs. For the development team, scenarios assisted in solving usability issues, and served as a basis for describing use cases and for further system development. More importantly, the shared care scenarios ensured the provision of different perspectives on common work processes, which are often neglected in conventional requirements specifications. This also improved understanding between different clinical groups and between clinicians and developers.

    Keywords
    Interdisciplinary communication, Integrated health care systems, Software design, Nursing records, Medical records, Home care services
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:uu:diva-97968 (URN)10.1016/j.ijmedinf.2008.07.007 (DOI)000278192800014 ()18762445 (PubMedID)
    Available from: 2009-01-23 Created: 2009-01-23 Last updated: 2018-11-03
    2. Studying intersection points - an analysis of information needs in shared homecare of elderly
    Open this publication in new window or tab >>Studying intersection points - an analysis of information needs in shared homecare of elderly
    2009 (English)In: The Journal on Information Technology in Healthcare, Vol. 1, p. 1-20Article in journal (Refereed) Published
    Abstract
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:uu:diva-97969 (URN)
    Available from: 2009-01-23 Created: 2009-01-23 Last updated: 2018-11-03Bibliographically approved
    3. Bridging the gap: a virtual health record for integrated home care
    Open this publication in new window or tab >>Bridging the gap: a virtual health record for integrated home care
    2007 (English)In: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 7, no June, p. e26-Article in journal (Refereed) Published
    Abstract [en]

    INTRODUCTION: The coexistence of different information systems that are unable to communicate is a persistent problem in healthcare and in integrated home care in particular. THEORY AND METHODS: Physically federated integration is used for design of the underlying technical architecture to implement a mobile virtual health record for integrated home care. A user centered system development approach is followed during design and development of the system. RESULTS: A technical platform based on a service-oriented approach where database functionality and services are separated has been developed. This guarantees flexibility with regard to changed functional demands and allows third party systems to interact with the platform in a standardized way. A physically federated integration enables point-of-care documentation, integrated presentation of information from different feeder systems, and offline access to data on handheld devices. Feeder systems deliver information in XML-files that are mapped against an ideal XML schema, published as an interface for integration with the information broker, and inserted into the mediator database. CONCLUSIONS: A seamless flow of information between both different care professionals involved in integrated home care and patients and relatives is provided through mobile information access and interaction with different feeder systems using the virtual health record.

    Keywords
    medical records systems, computerized, integrated advanced information management systems, information storage and retrieval, internet, home care services, nursing record
    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:uu:diva-97970 (URN)17637872 (PubMedID)
    Available from: 2009-01-23 Created: 2009-01-23 Last updated: 2017-12-14Bibliographically approved
    4. Modeling and sharing of personalized care plans using ContSYS, openEHR reference model and archetypes to support collaboration in shared homecare of elderly
    Open this publication in new window or tab >>Modeling and sharing of personalized care plans using ContSYS, openEHR reference model and archetypes to support collaboration in shared homecare of elderly
    (English)In: J Am Med Inform AssocArticle in journal (Refereed) Submitted
    Abstract
    Identifiers
    urn:nbn:se:uu:diva-97971 (URN)
    Available from: 2009-01-23 Created: 2009-01-23 Last updated: 2018-11-03Bibliographically approved
  • 14.
    Hägglund, Maria
    Health Informatics Centre, Karolinska Institutet.
    User-Centered Design for Patient-Centered eHealth2013Conference paper (Other academic)
  • 15. Hägglund, Maria
    et al.
    Bolin, Peter
    Koch, Sabine
    Experiences as input to eHealth design - a hip surgery patient journey case.2015Conference paper (Refereed)
    Abstract [en]

    The objective of the study is to describe the planned hip-surgery care process as experienced by patients and healthcare professionals, as well as a qualitative analysis of problems. Data was collected through 3 focus group meetings with patients and healthcare professionals. We present the results in form of a patient journey model, examples of problems as expressed by patients and examples of proposed eHealth services by both patients and care professionals. The results indicate that although the patient journey is similar for most patients, their experiences are highly individual and designing eHealth to improve the patient journey will require flexibility and adaptability to the individual's needs.

  • 16. Hägglund, Maria
    et al.
    Bolin, Peter
    Koch, Sabine
    Living with Lung Cancer--Patients' Experiences as Input to eHealth Service Design.2015Conference paper (Refereed)
    Abstract [en]

    The objective of the study is to describe the lung cancer care process as experienced by patients, as well as to perform a qualitative analysis of problems they encounter throughout the patient journey. A user-centered design approach was used and data collected through two focus group meetings with patients. We present the results in the form of a patient journey model, descriptions of problems related to the journey as expressed by patients and proposed eHealth services discussed by patients in the focus groups. The results indicate that not only is the patient journey fragmented and different for each patient going through it depending upon their specific type of lung cancer and treatment options, but their experiences are also highly individual and dependent on their personal needs and interpretations of the process. Designing eHealth to improve the patient journey will therefore require flexibility and adaptability to the individual's needs.

  • 17. Hägglund, Maria
    et al.
    Chen, Rong
    Koch, Sabine
    Modeling shared care plans using CONTsys and openEHR to support shared homecare of the elderly.2011In: JAMIA Journal of the American Medical Informatics Association, ISSN 1067-5027, E-ISSN 1527-974X, Vol. 18, no 1, p. 66-9Article in journal (Refereed)
    Abstract [en]

    This case report describes how two complementary standards, CONTsys (European Standard EN 13940-1 for continuity of care) and the reference model of openEHR, were applied in modeling a shared care plan for shared homecare based on requirements from the OLD@HOME project. Our study shows that these requirements are matched by CONTsys on a general level. However, certain attributes are not explicit in CONTsys, for example agents responsible for performing planned interventions, and support for monitoring outcome of interventions. We further studied how the care plan conceptual model can be implemented using the openEHR reference model. The study demonstrates the feasibility of developing shared care plans combining a standard concept model, for example CONTsys with an electronic health records (EHR) interoperability specification, that is the openEHR, while highlighting areas that need further exploration. It also explores the reusability of existing clinical archetypes as building blocks of care plans and the modeling of new shared care plan archetypes.

  • 18.
    Hägglund, Maria
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    DesRoches, Catherine
    Harvard Medical School and Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA.
    Petersen, Carolyn
    Division of Biomedical Statistics and Informatics, Mayo Clinic, Rochester, Minnesota, USA.
    Scandurra, Isabella
    Informatics, Örebro University School of Business, Örebro, Sweden.
    Patients’ access to health records2019In: BMJ. British Medical Journal, E-ISSN 1756-1833, Vol. 367, article id l5725Article in journal (Other academic)
    Abstract [en]

    Patients and clinicians are equally frustrated by the slow pace of changeThe international movement pushing to increase transparency by giving patients easy access to their health information parallels a broader shift in healthcare towards increased patient empowerment and participation. In the United States, the philanthropic OpenNotes initiative works to increase transparency by encouraging healthcare organisations to provide patients with access to notes in their electronic health record. It began in 2010 as a pilot that included 105 volunteer primary care providers and their 19 000 patients and has since spread throughout the US, with more than 200 organisations offering roughly 41 million patients access to their clinical notes. In Sweden, the first region-wide implementation of patient access to electronic health records was in 2012, more than 10 years after the first pilot study. All 21 Swedish regions have now offered this e-service through a national patient portal that integrates with all electronic health record systems currently used in Sweden. More than 3 million people (>30% of the population) had accessed their records online by August 2019, and more than 2 million logins occur each month.

    Similar patient accessible electronic record systems are implemented in other countries, though different strategies and approaches have influenced uptake and impact. Progress has been slow because of legal constraints, technical challenges, and concerns or resistance among healthcare professionals. Low rates of adoption among patients have also been a problem in some areas. Nonetheless, research evidence reports positive outcomes among patients accessing their records, and the concerns expressed by healthcare professionals have not been realised. Patients who read their notes report understanding their care plans better, feeling more in control of their care, doing a better job taking their medications, improved communication with and trust in their clinicians, and improved patient safety.

  • 19.
    Hägglund, Maria
    et al.
    Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden.
    Heinze, Oliver
    Department of Medical Information Systems, Univ. Hospital, Heidelberg, Germany.
    Pobiruchin, Monika
    GECKO Institute for Medicine, Informatics and Economics, Heilbronn University, Heilbronn University, Germany.
    Pohl, Anna-Lena
    Institute for eHealth and Management in HealthCare, Flensburg University, Flensburg, Germany.
    Scandurra, Isabella
    Örebro universitet, Handelshögskolan vid Örebro Universitet.
    Schreiweis, Björn
    Department of Medical Information Systems, Univ. Hospital, Heidelberg, Germany.
    Wiesner, Martin
    Dept. of Medical Informatics, Heilbronn University, Germany.
    Opportunities and Challenges of Consumer-centric eHealth Services: An Interdisciplinary Workshop2016Conference paper (Other academic)
  • 20.
    Hägglund, Maria
    et al.
    Centrum för Hälsoinformatik, Karolinska Institutet.
    Heinze, Oliver
    Pobiruchin, Monika
    Pohl, Anna-Lena
    Scandurra, Isabella
    Schreiweis, Björn
    Wiesner, Martin
    Report on the HEC 2016 Workshop: Opportunities and Challenges of Consumer-centric eHealth Services–An Interdisciplinary Workshop2016Report (Other academic)
  • 21.
    Hägglund, Maria
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Hellsten, Sofie
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Bagchi, Sonchita
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Philippot, Gaëtan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Löfqvist, Erik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Nilsson, Victor
    Almkvist, Ingrid
    Karlsson, Edvin
    Sreedharan, Smitha
    Tafreshiha, Atieh
    Fredriksson, Robert
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Transport of L-glutamine, L-alanine and L-histidine by the neuron-specific Slc38a8 (SNAT8) in CNS.: SNAT8 is a neuronal glutamine transporter.In: Article in journal (Refereed)
  • 22. Hägglund, Maria
    et al.
    Henkel, Martin
    Zdravkovic, Jelena
    Johannesson, Paul
    Rising, Inger
    Krakau, Ingvar
    Koch, Sabine
    A new approach for goal-oriented analysis of healthcare processes.2010Conference paper (Refereed)
    Abstract [en]

    The development of efficient e-services for patient-centered healthcare requires insight into concrete problems in administrative and clinical work processes as well as an understanding of the strategic goals that should guide these healthcare processes. However, considering both concrete process related problems and high-level strategic goals during process analysis and solution design can be problematic. To address this, we propose a structured approach for analyzing both high- and low-level goals in a healthcare process and relating these to identified problems. Thereby proposed solutions for each problem in form of, e.g. e-services can be connected to strategic goals. The approach consists of five steps; process modeling; process-based problem identification and classification; process goal identification; mapping to strategic goals; and solution proposal. The approach is illustrated by examples from a case study of Swedish stroke care. In conclusion, the approach enables analysis of high- and low-level goals in a healthcare process by relating these to identified problems. The results thereof form a basis for redefinition of current care processes, as well as for design of supporting e-health solutions.

  • 23.
    Hägglund, Maria
    et al.
    Karolinska Institutet, Solna, Sverige.
    Karlsson, M. G. Daniel
    Linköpings universitet, Avdelningen för medicinsk teknik.
    Klein, Gunnar
    Örebro Universitet, Örebro, Sverige.
    Koch, Sabine
    Karolinska Institutet, Solna, Sverige.
    Lindgren, Helena
    Umeå Universitet, Umeå, Sverige.
    Nyström, Mikael
    Linköpings universitet, Avdelningen för medicinsk teknik.
    Scandurra, Isabella
    Örebro Universitet, Örebro, Sverige.
    Sundvall, Erik
    Linköpings universitet, Avdelningen för medicinsk teknik.
    Världsbäst på eHälsa kräver internationellt samarbete2017In: Svenska dagbladet, ISSN 1101-2412Article in journal (Other (popular science, discussion, etc.))
    Abstract [sv]

    Det är glädjande att myndigheter nu äntligen tittar mer på internationellt delade detaljerade dokumentationsmodeller för innehåll i journaler. Vi hoppas att de ger tillräckligt kraftfulla och tydliga budskap så att de upphandlande vårdgivarna också ser vikten av detta. Om vi ska bli världsbäst på eHälsa krävs internationellt samarbete, skriver flera forskare i medicinsk informatik.

  • 24. Hägglund, Maria
    et al.
    Koch, Sabine
    Commentary: Sweden rolls out online access to medical records and is developing new e-health services to enable people to manage their care.2015In: BMJ. British Medical Journal, E-ISSN 1756-1833, Vol. 350, article id h359Article in journal (Refereed)
  • 25. Hägglund, Maria
    et al.
    Moll, Jonas
    Åhlfeldt, Rose-Mharie
    Scandurra, Isabella
    Timing It Right - Patients' Online Access to Their Record Notes in Sweden.2018Conference paper (Refereed)
    Abstract [en]

    In Sweden, and internationally, there is an ongoing debate about the effects of national implementations of Patient Accessible Electronic Health Records (PAEHRs). The purpose of this paper was to describe the current situation in Sweden and compare this with the expectations on reasonable waiting time for information access of users of the Swedish PAEHR. Data were collected from publicly available resources regarding current implementation in the 21 county councils, contrasted with patient experiences, gathered from a national online survey. The results indicate that patients have high expectations on immediate access to information, while this varies greatly in implementation across Sweden.

  • 26.
    Hägglund, Maria
    et al.
    Health Informatics Centre, Karolinska Institutet.
    Scandurra, I.
    Koch, S.
    Supporting citizen-centered care for seniors - experiences from two Swedish research projects2012In: 2012 25th IEEE International Symposium on Computer-Based Medical Systems (CBMS), 2012, p. 1-6Conference paper (Refereed)
    Abstract [en]

    The development of information and communication technology (ICT) for citizen-centered care requires insight into concrete problems in care processes as well as an understanding of the goals and values that should guide these. In this retrospective study we return to results from two research projects focusing on the needs of senior citizens and stroke patients. We describe the intersections between health care services, social care services and private services, and analyze these with focus on the needs of independence, continuity and participation. The current state of ICT in relation to the identified needs is also addressed. In conclusion, an increasing number of solutions are available to support senior citizens in different parts of their lives, yet they remain isolated and have limited impact. In order to harness value for senior citizens, it is imperative to continue with multidisciplinary research focusing on socio-technical aspects; addressing technological, organizational, legal and business-related aspects.

  • 27. Hägglund, Maria
    et al.
    Scandurra, Isabella
    A Socio-Technical Analysis of Patient Accessible Electronic Health Records.2017Conference paper (Refereed)
    Abstract [en]

    In Sweden, and internationally, there is a movement towards increased transparency in healthcare including giving patients online access to their electronic health records (EHR). The purpose of this paper is to analyze the Swedish patient accessible EHR (PAEHR) service using a socio-technical framework, to increase the understanding of factors that influence the design, implementation, adoption and use of the service. Using the Sitting and Singh socio-technical framework as a basis for analyzing the Swedish PAEHR system and its context indicated that there are many stakeholders engaged in these types of services, with different driving forces and incentives that may influence the adoption and usefulness of PAEHR services. The analysis was useful in highlighting important areas that need to be further explored in evaluations of PAEHR services, and can act as a guide when planning evaluations of any PAEHR service.

  • 28.
    Hägglund, Maria
    et al.
    Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden.
    Scandurra, Isabella
    Örebro universitet, Handelshögskolan vid Örebro Universitet.
    Does user centred design work in homecare for elderly?: a retrospective on the OLD@HOME case2011In: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 11Article in journal (Refereed)
    Abstract [en]

    Introduction: Mobile information and communication technology (ICT) has been suggested to improve collaboration in integrated homecare, yet, few successful implementations are available. User centred design (UCD) can improve the usefulness of ICT, however, it is often claimed to be expensive and difficult to use in healthcare. In the action research project OLD@HOME (Sweden 2002–2005) a user centred approach was adapted to the specific context of integrated homecare for elderly.

    Aim: To revisit OLD@HOME and explore what methodological adjustments were needed to adapt UCD to integrated homecare of elderly, and what the long-term effects of using UCD were.

    Results: Our collaborative design method included all stakeholders and enabled development of both new work situations and new tools. Five years after implementation, the system is still used by home help service personnel, for both homecare- and office-based work, as it provides ubiquitous access to information and communication. Technical support is rarely needed; experienced users handle occurring problems, training and introduction of new users.

    Conclusions: We consider the development method a key factor for the OLD@HOME system’s success as it enabled the design of a homecare system that is not only easy to use, but adapted to the context of integrated homecare for elderly

  • 29.
    Hägglund, Maria
    et al.
    Karolinska Institutet.
    Scandurra, Isabella
    Örebro universitet, Handelshögskolan vid Örebro Universitet.
    Empowering patients and relatives in elderly care by information access2008Conference paper (Refereed)
  • 30. Hägglund, Maria
    et al.
    Scandurra, Isabella
    Patients' Online Access to Electronic Health Records: Current Status and Experiences from the Implementation in Sweden.2017Conference paper (Refereed)
    Abstract [en]

    The number of eHealth services for patients is rapidly increasing worldwide. This paper describes the status of a very important eHealth service for patients in Sweden, the Patient Accessible Electronic Health Record (PAEHR). As many countries are facing an introduction of national eHealth services providing health information to the patients, lessons learned from Sweden may improve the deployment and use of PAEHRs and similar eHealth services. Challenges that remain in Sweden relate to local differences in the implementation that lead to fragmentation and unequal access to information. Initiatives have been taken to reconcile some of the problems, e.g. an updated national regulatory framework for PAEHR. To date, evaluations are often performed from a healthcare provider perspective, focusing on aspects that are considered important by healthcare professionals and decision makers. Based on experiences of this nation-wide implementation we argue for the need to also base evaluations of eHealth on the perspective of the patients.

  • 31.
    Hägglund, Maria
    et al.
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Centre for eHealth. Department of Medical Sciences.
    Scandurra, Isabella
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Centre for eHealth. Department of Medical Sciences.
    Koch, Sabine
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Centre for eHealth. Department of Medical Sciences.
    Integrated Care Plan for Shared Home Care - the technical architecture2005In: The Journal of Information Technology in Healthcare, Vol. 3, no 5, p. 377-382Article in journal (Refereed)
  • 32.
    Hägglund, Maria
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Centre for eHealth.
    Scandurra, Isabella
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Centre for eHealth.
    Koch, Sabine
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Centre for eHealth.
    Scenarios to capture work processes in shared homecare-From analysis to application2010In: International Journal of Medical Informatics, ISSN 1386-5056, E-ISSN 1872-8243, Vol. 79, no 6, p. E126-E134Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Shared homecare is increasingly common, and in order to develop ICT that support such complex cooperative and interdisciplinary work it is crucial to obtain an understanding of work processes at the clinical level before the development is initiated. It is also crucial, but difficult, to correctly transfer this insight to the development team. METHOD: User-centered scenario building in interdisciplinary working groups is applied for capturing cooperative work routines, information demands, and other central preconditions in shared homecare. RESULTS: Use of scenarios for analysis of cooperative work and as information carrier is described via a case from the multi-disciplinary OLD@HOME project. Both current and future work scenarios were elicited. To illustrate the process of transforming scenarios into more technical descriptions (use cases), and finally into an application, examples showing the transparency in resulting use cases and in the implemented system are provided. CONCLUSION: In this case study, scenarios proved to be useful not only in initial system development phases but throughout the entire development process, improving accessibility and assessment of end user needs. For the development team, scenarios assisted in solving usability issues, and served as a basis for describing use cases and for further system development. More importantly, the shared care scenarios ensured the provision of different perspectives on common work processes, which are often neglected in conventional requirements specifications. This also improved understanding between different clinical groups and between clinicians and developers.

  • 33.
    Hägglund, Maria
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Centre for eHealth.
    Scandurra, Isabella
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Centre for eHealth.
    Koch, Sabine
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Centre for eHealth.
    Using scenarios to capture work processes in shared home care2007In: INFORMATION TECHNOLOGY IN HEALTH CARE 2007 / [ed] Westbrook J.I.; Coiera E.W.; Callen J.L.; Aarts J., Amsterdam: I O S PRESS , 2007, p. 233-239Conference paper (Refereed)
  • 34.
    Hägglund, Maria
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Scandurra, Isabella
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Moström, Dennis
    Koch, Sabine
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Bridging the gap: a virtual health record for integrated home care2007In: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 7, no June, p. e26-Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: The coexistence of different information systems that are unable to communicate is a persistent problem in healthcare and in integrated home care in particular. THEORY AND METHODS: Physically federated integration is used for design of the underlying technical architecture to implement a mobile virtual health record for integrated home care. A user centered system development approach is followed during design and development of the system. RESULTS: A technical platform based on a service-oriented approach where database functionality and services are separated has been developed. This guarantees flexibility with regard to changed functional demands and allows third party systems to interact with the platform in a standardized way. A physically federated integration enables point-of-care documentation, integrated presentation of information from different feeder systems, and offline access to data on handheld devices. Feeder systems deliver information in XML-files that are mapped against an ideal XML schema, published as an interface for integration with the information broker, and inserted into the mediator database. CONCLUSIONS: A seamless flow of information between both different care professionals involved in integrated home care and patients and relatives is provided through mobile information access and interaction with different feeder systems using the virtual health record.

  • 35.
    Hägglund, Maria
    et al.
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Centre for eHealth. Department of Medical Sciences.
    Scandurra, Isabella
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Centre for eHealth. Department of Medical Sciences.
    Moström, Dennis
    XLENT technology.
    Koch, Sabine
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Centre for eHealth. Department of Medical Sciences.
    Integration architecture of a mobile virtual health record for shared home care.2005In: Connecting Medical Informatics and Bioinformatics, 2005Conference paper (Refereed)
  • 36. Hägglund, Maria
    et al.
    Scott Duncan, Therese
    Kai-Larsen, Karin
    Hedlin, Gunilla
    Krakau, Ingvar
    IntegrIT - Towards Utilizing the Swedish National Health Information Exchange Platform for Clinical Research.2017Conference paper (Refereed)
    Abstract [en]

    This paper describes how the Swedish national Health Information Exchange platform can be used to facilitate clinical research in the future. Different e-services for different user groups are being developed using a user-centered design approach. The main user groups are study participants, clinical researchers and healthcare professionals. The different e-services are based on an in-depth analysis of the clinical research process, and the main identified needs relate to recruitment of study participants, access to clinical data from different sources as well as improved tools for patients' self-reporting. The national Swedish HIE platform has the potential to enable a seamless connection between patients/citizens as study participants, health care professionals and everyday clinical work and clinical researchers in both academia and industry.

  • 37.
    Hägglund, Maria
    et al.
    Health Informatics Centre, Karolinska Institutet, Sweden.
    Åhlfeldt, Rose-Mharie
    Högskolan i Skövde, Institutionen för informationsteknologi.
    Koch, Sabine
    Health Informatics Centre, Karolinska Institutet, Sweden.
    Ålander, Ture
    Department of Public Health and Caring Sciences (IFV), Uppsala University.
    Scandurra, Isabella
    Informatics, School of Business, Örebro University, Sweden.
    Developing and implementing national eHealth services for patients: an interactive exploration of challenges andpotential solutions2015In: Digital Healthcare Empowering Europeans: Proceedings of MIE2015 / [ed] Ronald Cornet, Lăcrămioara Stoicu-Tivadar, Alexander Hörbst, Carlos Luis Parra Calderón, Stig Kjær Andersen, Mira Hercigonja-Szekeres, IOS Press , 2015Conference paper (Refereed)
    Abstract [en]

    In this workshop, examples and experiences from ongoing work todevelop and implement eHealth services for citizens will be provided. Challengesand potential solutions based on different international contexts will be discussedin interactive sessions. The results will form a report suggesting strategies andactivities that could provide potential solutions to the identified challenges.

  • 38. Kabukye, Johnblack K
    et al.
    Koch, Sabine
    Cornet, Ronald
    Orem, Jackson
    Hagglund, Maria
    User Requirements for an Electronic Medical Records System for Oncology in Developing Countries: A Case Study of Uganda.2017Conference paper (Refereed)
    Abstract [en]

    Cancer is a major public health challenge in developing countries but the healthcare systems are not well prepared to deal with the epidemic. Health information technologies such as electronic medical records (EMRs) have the potential to improve cancer care yet their adoption remains low, in part due to EMR systems not meeting user requirements. This study aimed at analyzing the user requirements for an EMR for a cancer hospital in Uganda. A user-centered approach was taken, through focus group discussion and interviews with target end users to analyze workflow, challenges and wishes. Findings highlight the uniqueness of oncology in low-resource settings and the requirements including support for oncology-specific documentation, reuse of data for research and reporting, assistance with care coordination, computerized clinical decision support, and the need to meet the constraints in terms of technological infrastructure, stretched healthcare workforce and flexibility to allow variations and exceptions.

  • 39. Koch, Sabine
    et al.
    Hägglund, Maria
    Health informatics and the delivery of care to older people.2009In: Maturitas, ISSN 0378-5122, E-ISSN 1873-4111, Vol. 63, no 3, p. 195-9Article in journal (Refereed)
    Abstract [en]

    In the light of an aging society, effective delivery of healthcare will be more dependent on different technological solutions supporting the decentralization of healthcare, higher patient involvement and increased societal demands. The aim of this article is therefore, to describe the role of health informatics in the care of elderly people and to give an overview of the state of the art in this field. Based on a review of the existing scientific literature, 29 review articles from the last 15 years and 119 original articles from the last 5 years were selected and further analysed. Results show that review articles cover the fields of information technology in the home environment, integrated health information systems, public health systems, consumer health informatics and non-technology oriented topics such as nutrition, physical behaviour, medication and the aging process in general. Articles presenting original data can be divided into 5 major clusters: information systems and decision support, consumer health informatics, emerging technologies, home telehealth, and informatics methods. Results show that health informatics in elderly care is an expanding field of interest but we still do lack knowledge about the elderly person's needs of technology and how it should best be designed. Surprisingly, few studies cover gender differences related to technology use. Further cross-disciplinary research is needed that relates informatics and technology to different stages of the aging process and that evaluates the effects of technical solutions.

  • 40. Koch, Sabine
    et al.
    Hägglund, Maria
    Mutual Learning and Exchange of Health Informatics Experiences from Around the World - Evaluation of a Massive Open Online Course in eHealth.2017Conference paper (Refereed)
    Abstract [en]

    We report our experiences from the Massive Open Online Course (MOOC), "eHealth - Opportunities and Challenges", run by Karolinska Institutet using the edx platform both as session-based and self-paced versions between 2015 and 2016. In total, 13,302 students from 162 different countries were enrolled in our courses during the two-year period whereof 573 completed them. 331 students answered an exit survey after finishing the course which was analysed using quantitative and qualitative methods. As positive outcomes of the course, students highlighted set-up and content of the course, the pedagogical approach and the consistent international focus. Students lacked more practical case studies, more interactive discussions and proposed advanced follow-up courses on certain topics. Faculty lacked better functions for management of the discussion forum. Major advantages of the MOOC were mutual learning and exchange of health informatics experiences from around the world that would have been difficult to achieve in traditional learning contexts.

  • 41. Koch, Sabine
    et al.
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Scandurra, Isabella
    Moström, Dennis
    OLD@HOME. Technical Support for Mobile Close Care. Final report2005Report (Other academic)
  • 42.
    Koch, Sabine
    et al.
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Medical Sciences.
    Hägglund, Maria
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Medical Sciences.
    Scandurra, Isabella
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Department of Medical Sciences.
    Moström, Dennis
    Towards a virtual health record for mobile home care of elderly citizens.2004In: Proceedings of MEDINFO 2004, 2004, p. 960-963Conference paper (Refereed)
    Abstract [en]

    Mobile work situations within home care of the elderly require immediate and ubiquitous access to patient-oriented data. The ongoing Swedish research project “Technical support for Mobile CloseCare” focuses on the development and evalua-tion of work-scenario oriented ICT support for enhanced home care of elderly citizens. The aim of the project is to pro-vide a seamless and consistent information flow between dif-ferent health care providers and to give intuitive access to information services for the elderly and their relatives. For that purpose, different independent software components are connected through a mobile communication platform. Flexible access to prioritized information for different users in different work situations will be given through a virtual health record. In order to obtain both usable and clinically relevant systems, a user centered system development approach is followed. Evaluation of the project results will be based on usability tests and quasi-experimental studies on how system implemen-tation influences quality of care and job- and life satisfaction for care providers, patients and relatives.

  • 43. Lindberg, Malin
    et al.
    Rosborg, Sofia
    Ramukumba, Mokholelana Margaret
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    Adapting mHealth to Workflow - A Case Study in South Africa.2019In: Context Sensitive Health Informatics: Sustainability in Dynamic Ecosystems, 2019, Vol. 265, p. 48-53Conference paper (Refereed)
    Abstract [en]

    Community Health Workers (CHW) perform important healthcare and health promotion in many low and middle income countries. They are increasingly supported in their work by the use of mHealth. This study aims to explore how mHealth services can support the everyday work for CHWs when delivering home care in rural areas in South Africa. A single case study was performed, mapping CHWs workflow and investigating where and when CHW can be supported by mHealth services. Despite the very positive feedback from the CHWs and the fact that the studied mHealth solutions appears to support the majority of the important activities in the CHWs work process, the application is no longer in use. Financial and strategic decisions are behind the discontinuation of the project, further stressing the importance of taking all socio-technical dimensions into account when evaluating success or failure of implementation projects.

  • 44. Lundberg, Nina
    et al.
    Koch, Sabine
    Health Informatics Centre, Karolinska Institutet.
    Hägglund, Maria
    Health Informatics Centre, Karolinska Institutet.
    Bolin, Peter
    Davoody, Nadia
    Health Informatics Centre, Karolinska Institutet.
    Eltes, Johan
    Jarlman, Olof
    Perlich, Anja
    Vimarlund, Vivian
    Winsnes, Casper
    My care pathways - creating open innovation in healthcare.2013Conference paper (Refereed)
    Abstract [en]

    In this paper we describe initial results from the Swedish innovation project "My Care Pathways" which envisions enabling citizens to track their own health by providing them with online access to their historical, current and prospective future events. We describe an information infrastructure and its base services as well as the use of this solution as an open source platform for open innovation in healthcare. This will facilitate the development of end-user e-services for citizens. We have technically enabled the information infrastructure in close collaboration with decision makers in three Swedish health care regions, and system vendors as well as with National eHealth projects. Close collaboration between heterogeneous actors made implementation in real practice possible. However, a number of challenges, mainly related to legal and business issues, persist when implementing our results. Future work should therefore target the development of business models for sustainable provision of end-user e-services in a public health care system such as the Swedish one. Also, a legal analysis of the development of third party provider (nonhealthcare based) personal health data e-services should be done.

  • 45.
    Moll, Jonas
    et al.
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction.
    Rexhepi, Hanife
    Cajander, Åsa
    Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Computerized Image Analysis and Human-Computer Interaction.
    Grünloh, Christiane
    Huvila, Isto
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Arts, Department of ALM.
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Myreteg, Gunilla
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Social Sciences, Department of Business Studies. Uppsala University, Disciplinary Domain of Science and Technology, Mathematics and Computer Science, Department of Information Technology, Division of Visual Information and Interaction.
    Scandurra, Isabella
    Åhlfeldt, Rose-Mharie
    Patients' experiences of accessing their electronic health records: National patient survey in Sweden2018In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 20, no 11, article id e278Article in journal (Refereed)
    Abstract [en]

    Background: Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients' experiences of using PAEHRs in Sweden or Europe, more generally.

    Objective: The objective of our study was to investigate patients' experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system.

    Methods: A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents.

    Results: Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one's health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen.

    Conclusions: In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way-several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

  • 46.
    Moström, Dennis
    et al.
    XLENT technology.
    Hägglund, Maria
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Centre for eHealth. Department of Medical Sciences.
    Koch, Sabine
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Centre for eHealth. Department of Medical Sciences.
    Scandurra, Isabella
    Uppsala University, Medicinska vetenskapsområdet, Faculty of Medicine, Centre for eHealth. Department of Medical Sciences.
    A Case Study of a Service Oriented Architecture (SOA) Implementation using the2006In: Proceedings of ICICTH 2006: International Conference on Information Communication Technology in Health, 2006Conference paper (Refereed)
  • 47. Ramukumba, Mokholelana Margaret
    et al.
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare.
    "I feel like a nurse and my clients learn more": mHealth, Capacity Building and Empowerment in Community Based Care.2019Conference paper (Refereed)
    Abstract [en]

    Community health workers, led by trained nurses who are linked to a health facility are well positioned to play an important role in improving health of the communities in low and middle-income countries. The South African Department of Health has implemented various mobile health programmes to improve community-based services. This paper presents a component of a study that evaluates mHealth interventions in South Africa. The study was conducted in Pretoria urban and semi-urban areas, with the aim of understanding how community health workers experience mHealth technologies. Three focus group interviews were conducted and data analysis followed Thorne Interpretive Description framework. An overarching theme was that the mHealth application provided clinical content that empowered community health workers to develop confidence, higher efficacy, independent decisions making and experience higher social standing with their clients. This in turn, translated into informed clients. There is evidence of strengthened capacity in the use of mHealth technology and application of knowledge to provide an engaged client care. Functionalities in the application allowed timely exchange of information and decision support.

  • 48. Riggare, Sara
    et al.
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Precision Medicine in Parkinson's Disease -: Exploring Patient-Initiated Self-Tracking2018In: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 8, no 3, p. 441-446Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Individually tailored healthcare, in the form of precision medicine, holds substantial potential for the future of medicine, especially for a complex disorder like Parkinson's disease (PD). Patient self-tracking is an under-researched area in PD.

    OBJECTIVE: This study aimed to explore patient-initiated self-tracking in PD and discuss it in the context of precision medicine.

    METHODS: The first author used a smartphone app to capture finger-tapping data and also noted times for medication intakes.

    RESULTS: Data were collected during four subsequent days. Only data from the first two days were complete enough to analyze, leading to the realization that the collection of data over a period of time can pose a significant burden to patients. From the first two days of data, a dip in finger function was observed around the time for the second medication dose of the day.

    CONCLUSIONS: Patient-initiated self-tracking enabled the first author to glean important insights about how her PD symptoms varied over the course of the day. Symptom tracking holds great potential in precision medicine and can, if shared in a clinical encounter, contribute to the learning of both patient and clinician. More work is needed to develop this field and extra focus needs to be given to balancing the burden of tracking for the patient against any expected benefit.

  • 49. Riggare, Sara
    et al.
    Höglund, Pär J
    Hvitfeldt Forsberg, Helena
    Eftimovska, Elena
    Svenningsson, Per
    Hägglund, Maria
    Patients are doing it for themselves: A survey on disease-specific knowledge acquisition among people with Parkinson's disease in Sweden.2017In: Health Informatics Journal, ISSN 1460-4582, E-ISSN 1741-2811, article id 1460458217704248Article in journal (Refereed)
    Abstract [en]

    Effective self-management is key to living well with Parkinson's disease and one important aspect is disease-specific knowledge. This article explores how people with Parkinson's disease in Sweden (1) acquire disease-specific knowledge and (2) use Parkinson's disease-related healthcare. Data were collected through an online survey, which had 346 respondents (16-87 years old, median age: 68 years, 51% male; time since diagnosis: 0-31 years, median time: 7 years). Our results show that disease-specific knowledge is mainly found online, especially for women with Parkinson's disease and people with Parkinson's disease of working age, that most people with Parkinson's disease in Sweden see their neurologist for 1 h or less per year and only one in two people with Parkinson's disease has regular contact with other Parkinson's disease-related healthcare professionals. We also find that people with Parkinson's disease reporting higher levels of specific knowledge also are more likely to be satisfied with the amount of time they get with their neurologist, regardless of the amount of time.

  • 50. Riggare, Sara
    et al.
    Scott Duncan, Therese
    Hvitfeldt, Helena
    Hägglund, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Research group (Dept. of women´s and children´s health), Clinical Psychology in Healthcare. Karolinska Inst.
    “You have to know why you're doing this”: a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease2019In: BMC Medical Informatics and Decision Making, ISSN 1472-6947, E-ISSN 1472-6947, Vol. 19, no 1, article id 175Article in journal (Refereed)
    Abstract [en]

    Background: This study explores opinions and experiences of people with Parkinson's disease (PwP) in Sweden of using self-tracking. Parkinson's disease (PD) is a neurodegenerative condition entailing varied and changing symptoms and side effects that can be a challenge to manage optimally. Patients' self-tracking has demonstrated potential in other diseases, but we know little about PD self-tracking. The aim of this study was therefore to explore the opinions and experiences of PwP in Sweden of using self-tracking for PD.

    Method: A mixed methods approach was used, combining qualitative data from seven interviews with quantitative data from a survey to formulate a model for self-tracking in PD. In total 280 PwP responded to the survey, 64% (n = 180) of which had experience from self-tracking.

    Result: We propose a model for self-tracking in PD which share distinctive characteristics with the Plan-Do-Study-Act (PDSA) cycle for healthcare improvement. PwP think that tracking takes a lot of work and the right individual balance between burdens and benefits needs to be found. Some strategies have here been identified; to focus on positive aspects rather than negative, to find better solutions for their selfcare, and to increase the benefits through improved tools and increased use of self-tracking results in the dialogue with healthcare.

    Conclusion: The main identified benefits are that self-tracking gives PwP a deeper understanding of their own specific manifestations of PD and contributes to a more effective decision making regarding their own selfcare. The process of self-tracking also enables PwP to be more active in communicating with healthcare. Tracking takes a lot of work and there is a need to find the right balance between burdens and benefits.

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