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| 2. |
- Hoffmann, Mikael, et al.
(författare)
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Guiding principles for the use of knowledge bases and real-world data in clinical decision support systems : report by an international expert workshop at Karolinska Institutet
- 2020
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Ingår i: Expert Review of Clinical Pharmacology. - : Taylor & Francis. - 1751-2433 .- 1751-2441. ; 13:9, s. 925-934
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Tidskriftsartikel (refereegranskat)abstract
- Introduction Technical and logical breakthroughs have provided new opportunities in medicine to use knowledge bases and large-scale clinical data (real-world) at point-of-care as part of a learning healthcare system to diminish the knowledge-practice gap. Areas covered The article is based on presentations, discussions and recommendations from an international scientific workshop. Value, research needs and funding avenues of knowledge bases and access to real-world data as well as transparency and incorporation of patient perspectives are discussed. Expert opinion Evidence-based, publicly funded, well-structured and curated knowledge bases are of global importance. They ought to be considered as a public responsibility requiring transparency and handling of conflicts of interest. Information has to be made accessible for clinical decision support systems (CDSS) for healthcare staff and patients. Access to rich and real-world data is essential for a learning health care ecosystem and can be augmented by data on patient-reported outcomes and preferences. This field can progress by the establishment of an international policy group for developing a best practice guideline on the development, maintenance, governance, evaluation principles and financing of open-source knowledge bases and handling of real-world data.
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| 4. |
- Lundberg, Nina, et al.
(författare)
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My Care Pathways - creating open innovation in healthcare
- 2013
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Ingår i: Medinfo 2013. - Netherländerna. - 9781614992882 ; 192, s. 687-91
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 5. |
- Mohd Sulaiman, Ismat, et al.
(författare)
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Mapping Acute Coronary Syndrome Registries to SNOMED CT. A Comparative Study between Malaysia and Sweden.
- 2017
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Ingår i: Methods of Information in Medicine. - : Schattauer Gmbh. - 0026-1270 .- 2511-705X. ; 56:4, s. 330-338
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Malaysia and Sweden have mapped their acute coronary syndrome registries using SNOMED CT. Since similar-purposed patient registries can be expected to collect similar data, these data should be mapped to the same SNOMED CT codes despite the different languages used. Previous studies have however shown variations in mapping between different mappers but the reasons behind these variations and the influence of different mapping approaches are still unknown.OBJECTIVES: To analyze similar-purposed registries and their registry-to-SNOMED CT maps, using two national acute coronary syndrome registries as examples, to understand the reasons for mapping similarities and differences as well as their implications.METHODS: The Malaysian National Cardiovascular Disease - Acute Coronary Syndrome (NCVD-ACS) registry was compared to the Swedish Register of Information and Knowledge about Swedish Heart Intensive Care Admissions (RIKS-HIA). The structures of NCVD-ACS and RIKS-HIA registry forms and their distributions of headings, variables and values were studied. Data items with equivalent meaning (EDIs) were paired and their mappings were categorized into match, mismatch, and non-comparable mappings. Reasons for match, mismatch and non-comparability of each paired EDI were seen as factors that contributed to the similarities and differences between the maps.RESULTS: The registries and their respective maps share a similar distribution pattern regarding the number of headings, variables and values. The registries shared 101 EDIs, whereof 42 % (42) were mapped to SNOMED CT. 45 % (19) of those SNOMED CT coded EDIs had matching codes. The matching EDIs occurred only in pre-coordinated SNOMED CT expressions. Mismatches occurred due to challenges arising from the mappers themselves, limitations in SNOMED CT, and complexity of the registries. Non-comparable mappings appeared due to the use of other coding systems, unmapped data items, as well as requests for new SNOMED CT concepts.CONCLUSIONS: To ensure reproducible and reusable maps, the following three actions are recommended: (i) develop a specific mapping guideline for patient registries; (ii) openly share maps; and (iii) establish collaboration between clinical research societies and the SNOMED CT community.
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| 6. |
- Scandurra, Isabella, 1973-, et al.
(författare)
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Application of the Multi-disciplinary Thematic Seminar Method in two Homecare Cases : A Comparative Study
- 2008
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Ingår i: EHealth Beyond the Horizon – Get IT There. - Amsterdam : IOS Press. - 9781586038649 - 9781607503330 ; 136, s. 597-602
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 8. |
- Davoody, Nadia, et al.
(författare)
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Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform : a case study
- 2019
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Ingår i: BMC Medical Informatics and Decision Making. - : Springer Science and Business Media LLC. - 1472-6947. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 9. |
- Davoody, Nadia, et al.
(författare)
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Collaborative interaction points in post-discharge stroke care.
- 2014
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Ingår i: International Journal of Integrated Care. - : Ubiquity Press, Ltd.. - 1568-4156 .- 1568-4156. ; 14
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Lack of appropriate electronic tools for supporting patient involvement and collaboration with care professionals is a problem in health care.METHODS: Care and rehabilitation processes of post-discharge stroke patients were analysed using the concept of interaction points where patients, next-of-kin and care professionals interact and exchange information. Thirteen interviews with care professionals and five non-participatory observations were performed. Data were analysed using content analysis and modelling of interaction points in the patient journey.RESULTS: Patient participation and interaction patterns vary; patients requiring home care have a passive role and next-of-kin or nurses become advocates by coordinating care on behalf of the patient, whereas patients who are able to visit primary care coordinate their own care by initiating interactions. Important categories of participation include the following: participation in care planning, in monitoring risk factors and in rehabilitation planning.CONCLUSIONS: Designing a supportive electronic tool requires understanding the interactions and patients' activity levels at each interaction point. A tool for patients with higher activity level should support them to coordinate their own care, whereas for a less-active patient group, the tool could focus on supporting next-of-kin and care professionals in motivating, guiding and including passive patients in their care and rehabilitation processes.
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| 10. |
- Davoody, Nadia, et al.
(författare)
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Post-discharge stroke patients' information needs as input to proposing patient-centred eHealth services.
- 2016
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Ingår i: BMC Medical Informatics and Decision Making. - : Springer Science and Business Media LLC. - 1472-6947. ; 16
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Despite the potential of eHealth services to revolutionize the way healthcare and prevention is provided many applications developed for patients fail to deliver their promise. Therefore, the aim of this study is to use patient journey mapping to explore post-discharge stroke patients' information needs to propose eHealth services that meet their needs throughout their care and rehabilitation processes.METHODS: Three focus groups with younger (<65 years) and older (> = 65 years) stroke patients were performed. Content analysis was used to analyse the data. Stroke patients' information needs was explored using patient journey model.RESULTS: Four main events (discharge from hospital, discharge from rehab clinic, coming home, and clinical encounters) and two phases (at rehab clinic, at home) have been identified in patients' post-discharge journey. The main categories identified in this study indicate that patients not only need to have access to health related information about their care and rehabilitation processes but also practical guidance through healthcare and community services. Patients also have different information needs at different events and during different phases. Potential supportive eHealth services were suggested by the researchers considering different parts of the patients' journeys.CONCLUSIONS: Patient journey models and qualitative analysis of patients' information needs are powerful tools that can be used to improve healthcare from a patient perspective. As patients' understanding of their illness changes over time, their need of more flexible support throughout the care and rehabilitation processes increases. To design appropriate eHealth services that meet patients' information needs, it is imperative to understand the current care and rehabilitation processes and identify patients' information needs throughout their journey.
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