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Hägglund, Maria, LektorORCID iD iconorcid.org/0000-0002-6839-3651
Publications (10 of 51) Show all publications
Davoody, N., Koch, S., Krakau, I. & Hägglund, M. (2019). Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform: a case study. BMC Medical Informatics and Decision Making, 19(1), Article ID 95.
Open this publication in new window or tab >>Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform: a case study
2019 (English)In: BMC Medical Informatics and Decision Making, ISSN 1472-6947, E-ISSN 1472-6947, Vol. 19, no 1, article id 95Article in journal (Refereed) Published
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.

Keywords
Health information exchange, Interoperability, eHealth services
National Category
Other Medical Sciences Computer and Information Sciences
Research subject
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-384017 (URN)10.1186/s12911-019-0816-x (DOI)000466952300001 ()31053141 (PubMedID)
Funder
Vinnova, 2011-02536
Available from: 2019-05-28 Created: 2019-05-28 Last updated: 2019-05-28Bibliographically approved
Lindberg, M., Rosborg, S., Ramukumba, M. M. & Hägglund, M. (2019). Adapting mHealth to Workflow - A Case Study in South Africa.. In: Context Sensitive Health Informatics: Sustainability in Dynamic Ecosystems. Paper presented at Context Sensitive Health Informatics (CSHI), Lille, August 23-24, 2019. (pp. 48-53). , 265
Open this publication in new window or tab >>Adapting mHealth to Workflow - A Case Study in South Africa.
2019 (English)In: Context Sensitive Health Informatics: Sustainability in Dynamic Ecosystems, 2019, Vol. 265, p. 48-53Conference paper, Published 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.

Series
Studies in Health Technology and Informatics ; 265
Keywords
Community Health Workers, Socio-Technical Systems, mHealth
National Category
Other Medical Sciences not elsewhere specified
Research subject
Medical Informatics; Medical Informatics; Medical Informatics
Identifiers
urn:nbn:se:uu:diva-392215 (URN)10.3233/SHTI190136 (DOI)31431576 (PubMedID)978-1-64368-005-7 (ISBN)
Conference
Context Sensitive Health Informatics (CSHI), Lille, August 23-24, 2019.
Projects
MobEVAL
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2016-00623
Available from: 2019-08-31 Created: 2019-08-31 Last updated: 2019-09-02Bibliographically approved
Bärkås, A., Scandurra, I. & Hägglund, M. (2019). Analysis of Voluntary User Feedback of the Swedish National PAEHR Service.. In: MEDINFO 2019: Health and Wellbeing e-Networks for All: Proceedings of the 17th World Congress on Medical and Health Informatics. Paper presented at MedInfo 2019, Lyon, 26-30 August, 2019. (pp. 1126-1130). , 264
Open this publication in new window or tab >>Analysis of Voluntary User Feedback of the Swedish National PAEHR Service.
2019 (English)In: 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, Published 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.

Series
Studies in Health Technology and Informatics ; 264
Keywords
Consumer Health Informatics, Electronic Health Records, Evaluation, Health Record, Patient Portals, Personal
National Category
Other Medical Sciences not elsewhere specified
Research subject
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-392213 (URN)10.3233/SHTI190401 (DOI)31438100 (PubMedID)978-1-64368-003-3 (ISBN)
Conference
MedInfo 2019, Lyon, 26-30 August, 2019.
Projects
PACESS (2016-00623)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2016-00623
Available from: 2019-08-31 Created: 2019-08-31 Last updated: 2019-09-02Bibliographically approved
Sandén, U., Nilsson, F., Thulesius, H., Hägglund, M. & Harrysson, L. (2019). Cancer, a relational disease: exploring the needs of relatives to cancer patients. International Journal of Qualitative Studies on Health and Well-being, 14(1), Article ID 1622354.
Open this publication in new window or tab >>Cancer, a relational disease: exploring the needs of relatives to cancer patients
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2019 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 14, no 1, article id 1622354Article in journal (Refereed) Published
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.

Keywords
Health, family members, carers, cancer care, grounded theory, waiting, safety, momentary contentment, salutogenesis, informal caregiver
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:uu:diva-384018 (URN)10.1080/17482631.2019.1622354 (DOI)000468976100001 ()31122166 (PubMedID)
Available from: 2019-05-28 Created: 2019-05-28 Last updated: 2019-06-20Bibliographically approved
Hägglund, M. (2019). E-hälsa i hemsjukvården: ett stöd för patientsäkervård (1ed.). In: Mirjam Ekstedt och Maria Flink (Ed.), Hemsjukvård: olika perspektiv på trygg och säker vård. Liber
Open this publication in new window or tab >>E-hälsa i hemsjukvården: ett stöd för patientsäkervård
2019 (Swedish)In: Hemsjukvård: olika perspektiv på trygg och säker vård / [ed] Mirjam Ekstedt och Maria Flink, Liber, 2019, 1Chapter in book (Other (popular science, discussion, etc.))
Place, publisher, year, edition, pages
Liber, 2019 Edition: 1
National Category
Other Medical Sciences not elsewhere specified
Research subject
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-393585 (URN)978-91-47-11277-7 (ISBN)
Available from: 2019-09-24 Created: 2019-09-24 Last updated: 2019-09-24
Rosborg, S., Lindberg, M., Ramukumba, M., Jäderlund Hagstedt, L. & Hägglund, M. (2019). Exploring mHealths Fit to Workflow in Homecare - A Case Study in Sweden.. In: Context Sensitive Health Informatics: Sustainability in Dynamic Ecosystems: . Paper presented at Context Sensitive Health Informatics (CSHI), Lille, August 23-24, 2019. (pp. 54-59). , 265
Open this publication in new window or tab >>Exploring mHealths Fit to Workflow in Homecare - A Case Study in Sweden.
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2019 (English)In: Context Sensitive Health Informatics: Sustainability in Dynamic Ecosystems, 2019, Vol. 265, p. 54-59Conference paper, Published paper (Refereed)
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.

Series
Studies in Health Technology and Informatics ; 265
Keywords
Evaluation, Homecare, Socio-Technical Systems, Workflow, mHealth
National Category
Other Medical Sciences not elsewhere specified
Research subject
Medical Informatics; Medical Informatics; Medical Informatics
Identifiers
urn:nbn:se:uu:diva-392214 (URN)10.3233/SHTI190137 (DOI)31431577 (PubMedID)978-1-64368-005-7 (ISBN)
Conference
Context Sensitive Health Informatics (CSHI), Lille, August 23-24, 2019.
Projects
MobEVAL
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2016-00623
Available from: 2019-08-31 Created: 2019-08-31 Last updated: 2019-09-02Bibliographically approved
Scott Duncan, T., Riggare, S., Koch, S., Sharp, L. & Hägglund, M. (2019). From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients. Journal of Medical Internet Research, 21(8), Article ID e13022.
Open this publication in new window or tab >>From Information Seekers to Innovators: Qualitative Analysis Describing Experiences of the Second Generation of E-Patients
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2019 (English)In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 21, no 8, article id e13022Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Current health care systems are rarely designed to meet the needs of people living with chronic conditions. However, some patients and informal caregivers are not waiting for the health care system to redesign itself. These individuals are sometimes referred to as e-patients. The first generation of e-patients used the internet for finding information and for communicating with peers. Compared with the first generation, the second generation of e-patients collects their own health data and appears to be more innovative.

OBJECTIVE: The aim of this study was to describe the second generation of e-patients through exploration of their active engagement in their self-care and health care.

METHODS: Semistructured interviews were conducted with 10 patients with chronic conditions and 5 informal caregivers. They were all recruited through a Web-based advertisement. Data were analyzed according to the framework analysis approach, using the 3 concepts of the self-determination theory-autonomy, relatedness, and competence-at the outset.

RESULTS: Study participants were actively engaged in influencing their self-care and the health care system to improve their own health, as well as the health of others. This occurred at different levels, such as using their own experience when giving presentations and lectures to health care professionals and medical students, working as professional peers in clinical settings, performing self-tracking, contributing with innovations, and being active on social media. When interaction with health care providers was perceived as being insufficient, the participants sought support through their peers, which showed strong relatedness. Competence increased through the use of technology and learning experiences with peers. Their autonomy was important but was sometimes described as involuntary and to give up was not an option for them.

CONCLUSIONS: Like the first generation of e-patients, the participants frequently searched for Web-based information. However, the second generation of e-patients also produce their own health data, which they learn from and share. They also engage in the innovation of digital tools to meet health-related needs. Utilizing technological developments comes naturally to the second generation of e-patients, even if the health care system is not prepared to support them under these new circumstances.

Keywords
consumer health informatics, eHealth, motivation, qualitative research, self-care
National Category
Other Medical Sciences
Research subject
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-391052 (URN)10.2196/13022 (DOI)000482729200001 ()31418421 (PubMedID)
Projects
Spetspatienter
Funder
Vinnova, 2017-01221
Available from: 2019-08-17 Created: 2019-08-17 Last updated: 2019-10-16Bibliographically approved
Ramukumba, M. M. & Hägglund, M. (2019). "I feel like a nurse and my clients learn more": mHealth, Capacity Building and Empowerment in Community Based Care.. In: : . Paper presented at Context Sensitive Health Informatics (CSHI) 2019 (pp. 195-200). , 265
Open this publication in new window or tab >>"I feel like a nurse and my clients learn more": mHealth, Capacity Building and Empowerment in Community Based Care.
2019 (English)Conference paper, Published 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.

Series
Studies of Health Technology and Informatics ; 265
Keywords
Capacity building, mHealth application, psycho-social aspects, self-efficacy, user satisfaction
National Category
Other Medical Sciences not elsewhere specified
Research subject
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-392235 (URN)10.3233/SHTI190163 (DOI)31431598 (PubMedID)
Conference
Context Sensitive Health Informatics (CSHI) 2019
Projects
MobEVAL
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2016-00623
Available from: 2019-09-01 Created: 2019-09-01 Last updated: 2019-09-01
Hägglund, M., DesRoches, C., Petersen, C. & Scandurra, I. (2019). Patients’ access to health records. BMJ. British Medical Journal, 367, Article ID l5725.
Open this publication in new window or tab >>Patients’ access to health records
2019 (English)In: BMJ. British Medical Journal, E-ISSN 1756-1833, Vol. 367, article id l5725Article in journal, Editorial material (Other academic) Published
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.

National Category
Other Medical Sciences not elsewhere specified Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-394094 (URN)10.1136/bmj.l5725 (DOI)000489774400010 ()31578180 (PubMedID)
Projects
PACESS (2016-00623)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2016-00623
Available from: 2019-10-02 Created: 2019-10-02 Last updated: 2019-11-08Bibliographically approved
Riggare, S., Scott Duncan, T., Hvitfeldt, H. & Hägglund, M. (2019). “You have to know why you're doing this”: a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease. BMC Medical Informatics and Decision Making, 19(1), Article ID 175.
Open this publication in new window or tab >>“You have to know why you're doing this”: a mixed methods study of the benefits and burdens of self-tracking in Parkinson's disease
2019 (English)In: BMC Medical Informatics and Decision Making, ISSN 1472-6947, E-ISSN 1472-6947, Vol. 19, no 1, article id 175Article in journal (Refereed) Published
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.

National Category
Other Medical Sciences not elsewhere specified
Research subject
Medical Informatics
Identifiers
urn:nbn:se:uu:diva-392216 (URN)10.1186/s12911-019-0896-7 (DOI)000483576700002 ()31470832 (PubMedID)
Projects
Spetspatienter
Funder
Vinnova, 2017-01221Forte, Swedish Research Council for Health, Working Life and Welfare, 2014-4238
Available from: 2019-08-31 Created: 2019-08-31 Last updated: 2019-10-17Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-6839-3651

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