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  • 1. Blease, Charlotte R
    et al.
    O'Neill, Stephen
    Walker, Jan
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Torous, John
    Sharing notes with mental health patients: balancing risks with respect2020Ingår i: Lancet psychiatry, ISSN 2215-0374, E-ISSN 2215-0366Artikel i tidskrift (Refereegranskat)
  • 2. Bärkås, Annika
    et al.
    Scandurra, Isabella
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Analysis of Voluntary User Feedback of the Swedish National PAEHR Service.2019Ingår i: MEDINFO 2019: Health and Wellbeing e-Networks for All: Proceedings of the 17th World Congress on Medical and Health Informatics, 2019, Vol. 264, s. 1126-1130Konferensbidrag (Refereegranskat)
    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.

    Ladda ner fulltext (pdf)
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  • 3. Davoody, Nadia
    et al.
    Koch, Sabine
    Krakau, Ingvar
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform: a case study2019Ingår i: BMC Medical Informatics and Decision Making, ISSN 1472-6947, E-ISSN 1472-6947, Vol. 19, nr 1, artikel-id 95Artikel i tidskrift (Refereegranskat)
    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.

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  • 4. 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 Technology2012Ingår i: Quality of Life through Quality of Information, 2012Konferensbidrag (Övrigt vetenskapligt)
    Ladda ner fulltext (pdf)
    fulltext
  • 5. Davoody, Nadia
    et al.
    Woldemariam, Yamrotsow
    Hägglund, Maria
    Health Informatics Centre, Karolinska Institutet.
    Stroke patients’ post-discharge information needs and actual information provision2014Konferensbidrag (Övrigt vetenskapligt)
    Ladda ner fulltext (pdf)
    fulltext
  • 6.
    Huvila, Isto
    et al.
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Historisk-filosofiska fakulteten, Institutionen för ABM.
    Eriksson-Backa, Kristina
    Moll, Jonas
    Uppsala universitet, Teknisk-naturvetenskapliga vetenskapsområdet, Matematisk-datavetenskapliga sektionen, Institutionen för informationsteknologi, Bildanalys och människa-datorinteraktion.
    Myreteg, Gunilla
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Företagsekonomiska institutionen.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Differences in the experiences of reading medical records online: Elderly, Older and Younger Adults compared2018Ingår i: Informaatiotutkimus, ISSN 1797-9129, Vol. 37, nr 3, s. 51-54Artikel i tidskrift (Refereegranskat)
  • 7.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    E-hälsa i hemsjukvården: ett stöd för patientsäkervård2019Ingår i: Hemsjukvård: olika perspektiv på trygg och säker vård / [ed] Mirjam Ekstedt; Maria Flink, Liber, 2019, 1Kapitel i bok, del av antologi (Övrig (populärvetenskap, debatt, mm))
  • 8.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Sharing is Caring: Integrating Health Information Systems to Support Patient-Centred Shared Homecare2009Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
    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.

    Delarbeten
    1. Scenarios to capture work processes in shared homecare-From analysis to application
    Öppna denna publikation i ny flik eller fönster >>Scenarios to capture work processes in shared homecare-From analysis to application
    2010 (Engelska)Ingår i: International Journal of Medical Informatics, ISSN 1386-5056, E-ISSN 1872-8243, Vol. 79, nr 6, s. E126-E134Artikel i tidskrift (Refereegranskat) 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.

    Nyckelord
    Interdisciplinary communication, Integrated health care systems, Software design, Nursing records, Medical records, Home care services
    Nationell ämneskategori
    Medicin och hälsovetenskap
    Identifikatorer
    urn:nbn:se:uu:diva-97968 (URN)10.1016/j.ijmedinf.2008.07.007 (DOI)000278192800014 ()18762445 (PubMedID)
    Tillgänglig från: 2009-01-23 Skapad: 2009-01-23 Senast uppdaterad: 2018-11-03
    2. Studying intersection points - an analysis of information needs in shared homecare of elderly
    Öppna denna publikation i ny flik eller fönster >>Studying intersection points - an analysis of information needs in shared homecare of elderly
    2009 (Engelska)Ingår i: The Journal on Information Technology in Healthcare, Vol. 1, s. 1-20Artikel i tidskrift (Refereegranskat) Published
    Abstract
    Nationell ämneskategori
    Medicin och hälsovetenskap
    Identifikatorer
    urn:nbn:se:uu:diva-97969 (URN)
    Tillgänglig från: 2009-01-23 Skapad: 2009-01-23 Senast uppdaterad: 2018-11-03Bibliografiskt granskad
    3. Bridging the gap: a virtual health record for integrated home care
    Öppna denna publikation i ny flik eller fönster >>Bridging the gap: a virtual health record for integrated home care
    2007 (Engelska)Ingår i: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 7, nr June, s. e26-Artikel i tidskrift (Refereegranskat) 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.

    Nyckelord
    medical records systems, computerized, integrated advanced information management systems, information storage and retrieval, internet, home care services, nursing record
    Nationell ämneskategori
    Medicin och hälsovetenskap
    Identifikatorer
    urn:nbn:se:uu:diva-97970 (URN)17637872 (PubMedID)
    Tillgänglig från: 2009-01-23 Skapad: 2009-01-23 Senast uppdaterad: 2017-12-14Bibliografiskt granskad
    4. Modeling and sharing of personalized care plans using ContSYS, openEHR reference model and archetypes to support collaboration in shared homecare of elderly
    Öppna denna publikation i ny flik eller fönster >>Modeling and sharing of personalized care plans using ContSYS, openEHR reference model and archetypes to support collaboration in shared homecare of elderly
    (Engelska)Ingår i: J Am Med Inform AssocArtikel i tidskrift (Refereegranskat) Submitted
    Abstract
    Identifikatorer
    urn:nbn:se:uu:diva-97971 (URN)
    Tillgänglig från: 2009-01-23 Skapad: 2009-01-23 Senast uppdaterad: 2018-11-03Bibliografiskt granskad
    Ladda ner fulltext (pdf)
    FULLTEXT01
    Ladda ner (pdf)
    COVER01
  • 9.
    Hägglund, Maria
    Health Informatics Centre, Karolinska Institutet.
    User-Centered Design for Patient-Centered eHealth2013Konferensbidrag (Övrigt vetenskapligt)
    Ladda ner fulltext (pdf)
    fulltext
  • 10.
    Hägglund, Maria
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    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 records2019Ingår i: BMJ. British Medical Journal, E-ISSN 1756-1833, Vol. 367, artikel-id l5725Artikel i tidskrift (Övrigt vetenskapligt)
    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.

  • 11.
    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 Workshop2016Konferensbidrag (Övrigt vetenskapligt)
  • 12.
    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 Workshop2016Rapport (Övrigt vetenskapligt)
    Ladda ner fulltext (pdf)
    fulltext
  • 13.
    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 samarbete2017Ingår i: Svenska dagbladet, ISSN 1101-2412Artikel i tidskrift (Övrig (populärvetenskap, debatt, mm))
    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.

  • 14. Hägglund, Maria
    et al.
    Moll, Jonas
    Åhlfeldt, Rose-Mharie
    Scandurra, Isabella
    Timing It Right - Patients' Online Access to Their Record Notes in Sweden.2018Konferensbidrag (Refereegranskat)
    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.

  • 15.
    Hägglund, Maria
    et al.
    Health Informatics Centre, Karolinska Institutet.
    Scandurra, I.
    Koch, S.
    Supporting citizen-centered care for seniors - experiences from two Swedish research projects2012Ingår i: 2012 25th IEEE International Symposium on Computer-Based Medical Systems (CBMS), 2012, s. 1-6Konferensbidrag (Refereegranskat)
    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.

  • 16.
    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 case2011Ingår i: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 11Artikel i tidskrift (Refereegranskat)
    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

  • 17.
    Hägglund, Maria
    et al.
    Karolinska Institutet.
    Scandurra, Isabella
    Örebro universitet, Handelshögskolan vid Örebro Universitet.
    Empowering patients and relatives in elderly care by information access2008Konferensbidrag (Refereegranskat)
  • 18.
    Hägglund, Maria
    et al.
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    Scandurra, Isabella
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    Koch, Sabine
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    Integrated Care Plan for Shared Home Care - the technical architecture2005Ingår i: The Journal of Information Technology in Healthcare, Vol. 3, nr 5, s. 377-382Artikel i tidskrift (Refereegranskat)
  • 19.
    Hägglund, Maria
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa.
    Scandurra, Isabella
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa.
    Koch, Sabine
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa.
    Using scenarios to capture work processes in shared home care2007Ingår i: INFORMATION TECHNOLOGY IN HEALTH CARE 2007 / [ed] Westbrook J.I.; Coiera E.W.; Callen J.L.; Aarts J., Amsterdam: I O S PRESS , 2007, s. 233-239Konferensbidrag (Refereegranskat)
  • 20.
    Hägglund, Maria
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Scandurra, Isabella
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Moström, Dennis
    Koch, Sabine
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Bridging the gap: a virtual health record for integrated home care2007Ingår i: International Journal of Integrated Care, ISSN 1568-4156, E-ISSN 1568-4156, Vol. 7, nr June, s. e26-Artikel i tidskrift (Refereegranskat)
    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.

  • 21.
    Hägglund, Maria
    et al.
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    Scandurra, Isabella
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    Moström, Dennis
    XLENT technology.
    Koch, Sabine
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    Integration architecture of a mobile virtual health record for shared home care.2005Ingår i: Connecting Medical Informatics and Bioinformatics, 2005Konferensbidrag (Refereegranskat)
  • 22.
    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 solutions2015Ingår i: 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 , 2015Konferensbidrag (Refereegranskat)
    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.

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  • 23. Koch, Sabine
    et al.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Scandurra, Isabella
    Moström, Dennis
    OLD@HOME. Technical Support for Mobile Close Care. Final report2005Rapport (Övrigt vetenskapligt)
  • 24.
    Koch, Sabine
    et al.
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Hägglund, Maria
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Scandurra, Isabella
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Moström, Dennis
    Towards a virtual health record for mobile home care of elderly citizens.2004Ingår i: Proceedings of MEDINFO 2004, 2004, s. 960-963Konferensbidrag (Refereegranskat)
    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.

  • 25. Lindberg, Malin
    et al.
    Rosborg, Sofia
    Ramukumba, Mokholelana Margaret
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Adapting mHealth to Workflow - A Case Study in South Africa.2019Ingår i: Context Sensitive Health Informatics: Sustainability in Dynamic Ecosystems, 2019, Vol. 265, s. 48-53Konferensbidrag (Refereegranskat)
    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.

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  • 26. 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.2013Konferensbidrag (Refereegranskat)
    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.

  • 27.
    Moll, Jonas
    et al.
    Uppsala universitet, Teknisk-naturvetenskapliga vetenskapsområdet, Matematisk-datavetenskapliga sektionen, Institutionen för informationsteknologi, Bildanalys och människa-datorinteraktion.
    Rexhepi, Hanife
    Cajander, Åsa
    Uppsala universitet, Teknisk-naturvetenskapliga vetenskapsområdet, Matematisk-datavetenskapliga sektionen, Institutionen för informationsteknologi, Bildanalys och människa-datorinteraktion.
    Grünloh, Christiane
    Huvila, Isto
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Historisk-filosofiska fakulteten, Institutionen för ABM.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Myreteg, Gunilla
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Företagsekonomiska institutionen. Uppsala universitet, Teknisk-naturvetenskapliga vetenskapsområdet, Matematisk-datavetenskapliga sektionen, Institutionen för informationsteknologi, Avdelningen för visuell information och interaktion.
    Scandurra, Isabella
    Åhlfeldt, Rose-Mharie
    Patients' experiences of accessing their electronic health records: National patient survey in Sweden2018Ingår i: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 20, nr 11, artikel-id e278Artikel i tidskrift (Refereegranskat)
    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.

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  • 28.
    Moström, Dennis
    et al.
    XLENT technology.
    Hägglund, Maria
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    Koch, Sabine
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    Scandurra, Isabella
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    A Case Study of a Service Oriented Architecture (SOA) Implementation using the2006Ingår i: Proceedings of ICICTH 2006: International Conference on Information Communication Technology in Health, 2006Konferensbidrag (Refereegranskat)
  • 29. Peute, Linda W.
    et al.
    Lichtner, Valentina
    Baysari, Melissa T.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Homco, Juell
    Jansen-Kosterink, Stephanie
    Jauregui, Ignacio
    Kaipio, Johanna
    Kuziemsky, Craig E.
    Lehnbom, Elin Christina
    Leite, Francisca
    Lesselroth, Blake
    Luna, Daniel
    Otero, Carlos
    Pedersen, Rune
    Pelayo, Sylvia
    Santos, Raquel
    Silva, Nuno-André
    Tyllinen, Mari
    Van Velsen, Lex
    Zheng, Wu Yi
    Jaspers, Monique
    Marcilly, Romaric
    Challenges and Best Practices in Ethical Review of Human and Organizational Factors Studies in Health Technology: a Synthesis of Testimonies2020Ingår i: IMIA Yearbook of Medical Informatics, ISSN 0943-4747, nr EFirstArtikel i tidskrift (Refereegranskat)
  • 30. Ramukumba, Mokholelana Margaret
    et al.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    "I feel like a nurse and my clients learn more": mHealth, Capacity Building and Empowerment in Community Based Care.2019Konferensbidrag (Refereegranskat)
    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.

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  • 31. Riggare, Sara
    et al.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Precision Medicine in Parkinson's Disease -: Exploring Patient-Initiated Self-Tracking2018Ingår i: Journal of Parkinson's Disease, ISSN 1877-7171, E-ISSN 1877-718X, Vol. 8, nr 3, s. 441-446Artikel i tidskrift (Refereegranskat)
    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.

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  • 32. Riggare, Sara
    et al.
    Scott Duncan, Therese
    Hvitfeldt, Helena
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård. 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 disease2019Ingår i: BMC Medical Informatics and Decision Making, ISSN 1472-6947, E-ISSN 1472-6947, Vol. 19, nr 1, artikel-id 175Artikel i tidskrift (Refereegranskat)
    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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  • 33. Rosborg, Sofia
    et al.
    Lindberg, Malin
    Ramukumba, Margaret
    Jäderlund Hagstedt, Lovisa
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård. Health Informatics Centre, Karolinska Institutet.
    Exploring mHealths Fit to Workflow in Homecare - A Case Study in Sweden.2019Ingår i: Context Sensitive Health Informatics: Sustainability in Dynamic Ecosystems, 2019, Vol. 265, s. 54-59Konferensbidrag (Refereegranskat)
    Abstract [en]

    With an ageing population and limited resources in healthcare, many high-income countries such as Sweden see an increase in homecare and mobile work for healthcare professionals. In this case study, we explore how mHealth services can support the everyday work for healthcare professionals when delivering home care in rural areas in Sweden. The studied mHealth application had failed to be adopted among district nurses, despite a great expressed need for mobile tools. The results indicate that the mHealth solution did not live up the healthcare professionals' expectations in terms of providing the same functions as the regular electronic health record systems, and with poor integration into the existing eco-system of eHealth applications. In conclusion, in order for a mHealth application to be successfully implemented in a context where many digital services are already in use, it is not enough to support important activities in the current workflow. The mHealth application will need to be carefully integrated into the existing eco-system of healthcare applications to increase the chances of adoption.

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  • 34. Sandén, Ulrika
    et al.
    Nilsson, Fredrik
    Thulesius, Hans
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Harrysson, Lars
    Cancer, a relational disease: exploring the needs of relatives to cancer patients2019Ingår i: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 14, nr 1, artikel-id 1622354Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Purpose: In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients.

    Methods: Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory.

    Results: Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative’s safety net. A percieved inability to improve their loved one’s well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death.

    Conclusions: By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient’s experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.

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  • 35. Scandurra, Isabella
    et al.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    A collaborative design method to support integrated care.: An ICT development method containing continuous user validation improves the entire care process and the individual work situation2009Konferensbidrag (Övrigt vetenskapligt)
  • 36.
    Scandurra, Isabella
    et al.
    APRI eHealth, Själevad, Sweden.
    Hägglund, Maria
    Karolinska University.
    An ICT development method containing Continuous User Validation improves the entire care process AND the individual work situation2009Konferensbidrag (Refereegranskat)
    Abstract [en]

    Introduction: Integrated care involves different professionals, belonging to different care provider organizations and requires immediate and ubiquitous access to patient-oriented information, supporting an integrated view on the care process.

    Purpose: To present a method for development of usable and work process-oriented information and communication technology (ICT) systems for integrated care.

    Theory and method: Based on Human-computer Interaction Science and in particular Participatory Design, we present a new collaborative design method in the context of health information systems (HIS) development. This method implies a thorough analysis of the entire interdisciplinary cooperative work and a transformation of the results into technical specifications, via user validated scenarios, prototypes and use cases, ultimately leading to the development of appropriate ICT for the variety of occurring work situations for different user groups, or professions, in integrated care.

    Results and conclusions: Application of the method in homecare of the elderly resulted in an HIS that was well adapted to the intended user groups. Conducted in multi-disciplinary seminars, the method captured and validated user needs and system requirements for different professionals, work situations, and environments not only for current work; it also aimed to improve collaboration in future (ICT supported) work processes. A holistic view of the entire care process was obtained and supported through different views of the HIS for different user groups, resulting in improved work in the entire care process as well as for each collaborating profession.

  • 37.
    Scandurra, Isabella
    et al.
    Örebro universitet, Handelshögskolan vid Örebro Universitet.
    Hägglund, Maria
    Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden.
    Developing and implementing national eHealth services for patients: an interactive exploration of challenges and potential solutions2015Ingår i: Driving Quality in Informatics: Fulfilling the Promise, 2015Konferensbidrag (Refereegranskat)
    Abstract [en]

    Developing and Implementing National eHealth Services for Patients – An Interactive Exploration of Challenges and Potential Solutions Isabella Scandurra, Informatics, School of Business, Örebro University, Sweden; Maria Hägglund, Health Informatics Centre, Karolinska Institutet, Sweden As a means to address current challenges for and demands on health and social care, e.g. quality of care and patient empowerment, information and communication technologies (ICT) are being used to supply citizens with various health services. One example is to give patients web access to their own electronic health records (EHRs). In this workshop, we will provide examples and experiences from ongoing work in Sweden to develop and implement eHealth services for citizens; SUSTAINS [1] and My Care Pathways [2].The workshop participants will be engaged in interactive discussions regarding challenges and potential solutions based on their experiences from different contexts. The aim of the workshop is twofold: 1. To explore challenges for developing and implementing e-health systems for citizens to access their patient information and other e-health services online. 2. To suggest strategies and activities that could provide potential solutions to the identified challenge. Workshop structure The disposition of the workshop is as follows: a 90 minute session, a 15 minutes break and another 75 minute session. The two sessions will contain both presentations from the workshop organizers and interactive discussions and work in smaller groups to engage all participants and share experiences from different contexts. This disposition requires active participants to generate new ideas and knowledge through discussions and reflections where all participants contribute with their knowledge and understanding of the problem. The topic is expected to engage a lot of people, maybe not only those present at the workshop or at the conference. The workshop organizers will encourage live tweeting during the sessions and invite followers. 

  • 38.
    Scandurra, Isabella
    et al.
    Örebro universitet, Handelshögskolan vid Örebro Universitet.
    Hägglund, Maria
    Karolinska Institutet, Stockholm, Sweden.
    How to introduce a mobile ICT system in homecare?: a socio-technical implementation process dis-/ covering staff’s opinions and intention to use ICT2008Konferensbidrag (Refereegranskat)
  • 39.
    Scandurra, Isabella
    et al.
    Örebro universitet, Handelshögskolan vid Örebro Universitet.
    Hägglund, Maria
    Health Informatics Centre, Karolinska Institutet, Stockholm, Sweden.
    Johansen, Monika
    Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway; Department of Clinical Medicine, the Artic University of Norway (UIT), Tromsø, Norway.
    Bergmo, Trine
    Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway.
    Zanaboni, Paolo
    Norwegian Centre for E-health Research, University Hospital of North Norway, Tromsø, Norway.
    Impact of Patient Accessible EHRs: An Interactive Workshop to Share Experiences and Explore Evaluation Approaches2017Konferensbidrag (Övrigt vetenskapligt)
  • 40.
    Scandurra, Isabella
    et al.
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Hägglund, Maria
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Johansson, Niklas
    Teknisk-naturvetenskapliga vetenskapsområdet, Matematisk-datavetenskapliga sektionen, Institutionen för informationsteknologi. Human-Computer Interaction.
    Sandblad, Bengt
    Teknisk-naturvetenskapliga vetenskapsområdet, Matematisk-datavetenskapliga sektionen, Institutionen för informationsteknologi. Human-Computer Interaction.
    Koch, Sabine
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    User needs for development of context dependent devices in mobile home care2003Ingår i: Human-Computer Interaction with mobile devices and services, 2003Konferensbidrag (Refereegranskat)
    Abstract [en]

    Mobile work situations within home care of the elderly require

    immediate and ubiquitous access to patient-oriented data. We intend to develop a mobile information system that provides correct information in a proper way to the right person in the appropriate occasion of care. This requires a thorough user needs analysis that so far often has been neglected during systems development in health care. We conducted the user needs analysis in interdisciplinary working groups in order to achieve a holistic view of the entire work process. This allows for the development of not only patient-oriented but care process oriented systems. In this paper, we describe how the user needs analysis was conducted, the impact of this work on the user group and some of the requirements found to be specific for mobile IT-support for home care of the elderly.

  • 41. Scandurra, Isabella
    et al.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Koch, Sabine
    Application of the multi-disciplinary thematic seminar method in two homecare cases - a comparative study.2008Ingår i: Studies in Health Technology and Informatics, ISSN 0926-9630, E-ISSN 1879-8365, Vol. 136, s. 597-602Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    UNLABELLED: A significant problem with current health information technologies is that they poorly support collaborative work of healthcare professionals, sometimes leading to a fragmentation of workflow and disruption of healthcare processes.

    OBJECTIVE: This paper presents two homecare cases, both applying multi-disciplinary thematic seminars (MdTS) as a collaborative method for user needs elicitation and requirements specification.

    METHODS: This study describes the MdTS application to elicit user needs from different perspectives to coincide with collaborative professions' work practices in two cases.

    RESULTS: Despite different objectives, the two cases validated that MdTS emphasized the "points of intersection" in cooperative work. Different user groups with similar, yet distinct needs reached a common understanding of the entire work process, agreed upon requirements and participated in the design of prototypes supporting cooperative work.

    CONCLUSION: MdTS was applicable in both exploratory and normative studies aiming to elicit the specific requirements in a cooperative environment.

  • 42.
    Scandurra, Isabella
    et al.
    Department of Medical Sciences, Uppsala University, University Hospital, Uppsala, Sweden; Center for eHealth, Uppsala University, Uppsala, Sweden.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Koch, Sabine
    Department of Medical Sciences, Uppsala University, University Hospital, Uppsala, Sweden; Center for eHealth, Uppsala University, Uppsala, Sweden.
    Clinicians’ opinions towards learning and performing Heuristic Evaluations of Health Information Systems2007Ingår i: Proceedings of 5th Scandinavian Conference on Health Informatics (SHI 2007) (Skandinaviska hälsoinformatik- och termkonferensen 2007) / [ed] Göran Petersson et. al., Kalmar: eHealth Institute , 2007, s. 62-62Konferensbidrag (Refereegranskat)
  • 43.
    Scandurra, Isabella
    et al.
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Hägglund, Maria
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Koch, Sabine
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Integrated care plan and documentation on handheld devices in mobile home care2004Ingår i: MobileHCI 2004: LNCS 3160, 2004, s. 496-500Konferensbidrag (Refereegranskat)
  • 44.
    Scandurra, Isabella
    et al.
    Örebro universitet, Handelshögskolan vid Örebro Universitet.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Koch, Sabine
    Karolinska University.
    Multi-disciplinary Thematic Seminars – a method for continuous user validation of system requirements in integrated care2008Konferensbidrag (Övrig (populärvetenskap, debatt, mm))
  • 45.
    Scandurra, Isabella
    et al.
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    Hägglund, Maria
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    Koch, Sabine
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Centrum för eHälsa. Institutionen för medicinska vetenskaper.
    Specific demands for developing ICT systems for shared home care - a user centred approach2005Ingår i: The Journal on Information Technology in Healthcare, Vol. 3, nr 4, s. 279-285Artikel i tidskrift (Refereegranskat)
  • 46.
    Scandurra, Isabella
    et al.
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Hägglund, Maria
    Moström, Dennis
    Koch, Sabine
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Old@Home - Tekniskt stöd till mobil närvård2004Ingår i: Proceedings of Sundsvall 42: - ADB i verksamhetens tjänst, 2004, s. 108-110Konferensbidrag (Övrigt vetenskapligt)
  • 47.
    Scandurra, Isabella
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper. Biomedicinsk informatik och teknik.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Moström, Dennis
    Koch, Sabine
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper. Biomedicinsk informatik och teknik.
    Old@Home - Tekniskt stöd till mobil närvård2004Ingår i: Proceedings of Sundsvall 42: - ADB i verksamhetens tjänst, 2004, s. 108-110Konferensbidrag (Övrigt vetenskapligt)
  • 48.
    Scandurra, Isabella
    et al.
    Uppsala University, Uppsala, Sweden.
    Hägglund, Maria
    Karolinska Institutet, Stockholm, Sweden.
    Åhlfeldt, Rose-Mharie
    Skövde University, Skövde, Sweden.
    Persson, Anne
    Skövde University, Skövde, Sweden.
    Building usability into National eHealth strategies: An Action Research Approach2013Ingår i: Action Research, Interventions, and Participatory Design, 2013Konferensbidrag (Refereegranskat)
  • 49.
    Scandurra, Isabella
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Moström, Dennis
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Hägglund, Maria
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper.
    Introducing a mobile ICT system in homecare: evaluation of a socio-technical implementation process2008Ingår i: The Journal on Information Technology in Healthcare, ISSN 1479-649X, Vol. 6, nr 5, s. 356-366Artikel i tidskrift (Refereegranskat)
  • 50.
    Scandurra, Isabella
    et al.
    Örebro universitet, Handelshögskolan vid Örebro Universitet.
    Pettersson, Maria
    Inera AB, Stockholm, Sweden.
    Hägglund, Maria
    Karolinska Institutet, Stockholm, Sweden.
    When do people read their health record?: analysis of usage data of a national eHealth service giving patients access to their electronic health record2017Konferensbidrag (Övrigt vetenskapligt)
    Abstract [en]

    Introduction: eHealth services for citizens provide support for patients and families, as well as for healthcare professionals. In Sweden different eHealth services have been developed since the late 1990s and they are now used by millions of users. One of the national eHealth services that provides opportunities for increased participation in care is the Patient Accessible Electronic Health Record (PAEHR). To date (February 2017) over one million citizens (of 10 million inhabitants) have accessed their own electronic health record (EHR). In this study, we describe current usage by analysing log-data from the service. Who are the users, and how and when do they use the service?

    Method: Data collection of routinely captured usage data was administered by Inera AB, owner of all Swedish national eHealth services. Data was analyzed through IBM SPSS in accordance with the declaration of Helsinki. Queries for this quantitative study were created based on previously published results regarding concerns often expressed by healthcare professionals (HCP) as well as routinely captured log-data. Descriptive usage statistics were analysed towards such HCP concerns, e.g. increased workload due to worried patients reading but not understanding the PAEHR content.

    Results: Current status of the Swedish PAEHR is presented, e.g. number of users, demographic data (age, gender) in relation to log-in statistics. Regarding log-ins, first-time users and unique hits show that attention by national media has an impact a news cast resulted in 31,000 logged in compared to a week day average of 20,000. To date more than 1 million citizens have chosen to log in and the numbers are increasing. A newly connected region (Örebro) has an average of 500 new users a day. This can be compared to the first region (Uppsala) which during the first year (2012- 2013) had approx. 100 new users a day, although the strategy then was not to advertise the service. In total 10,000 to 13,000 new users log in every day nationally. More women than men log in and their mean age are 23-32 years. The older the users get the less they use the PAEHR, however some users are older than 93 years. During weekends the activity decreases, as opposed to HCP expectations. More often, users log in on week days, e.g. on Monday morning.

    Discussion: Usage statistics were related to concerns of HCP, which seem to have little resemblance to reality. One concern was that the service would not provide benefit for patients, here contradicted by the increasing number of both first-time and recurrent users. However, such indicators need to be further analysed. Paper records and PAEHR usage are difficult to compare, due to lack of statistics regarding printout reading. Usage comparisons between PAEHR solutions of different counties would however be interesting.

    Conclusion: Recurrent concerns of mainly HCP seem to be contradicted by actual usage by patients. This may lead to a decreased controversy of how PAEHR is experienced by patients and HCP. Knowledge about how users actually use PAEHR may also improve the service as such.

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