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BRIDGING THE INFORMATION GAP: Supporting Evidence-Based Medicine and Shared Decision-Making through Information Systems
University of Skövde, School of Informatics.ORCID iD: 0000-0001-8957-9853
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Practicing evidence-based medicine (EBM) and shared decision-making (SDM)along the patient process is important in today's healthcare environment, as thesemodels of care offer a way to improve quality and safety of care, patient satisfaction,and reduce costs. EBM is the conscientious and judicious use of current best medicalevidence in conjunction with clinical expertise. It also includes taking into accountpatient values and preferences to guide decisions about the care of individual patients.SDM offers a process that guides how a healthcare professional (e.g., a physicianor a nurse) and a patient jointly can participate in a decision after incorporatingthe body of evidence (the options, benefits and harms) and considering the patient'svalues and preferences.

The degree to which healthcare professionals can practice EBM and SDM is dependentupon the availability of information about the patient (e.g., medical diagnosis,therapies as well as laboratory and administrative information) and medical evidence(such as medical guidelines). Patient information is a prerequisite for making decisionsabout the care of individual patients and it is evidence-based medicalknowledge, clinical expertise as well as patient values and preferences that guidethese decisions. Moreover, for patients to be able to communicate values and preferencesas well as participate effectively in their own care, they need to have a basicunderstanding of their condition and treatment options, and the consequences ofeach. Hence, they need access to the same information streams—in "patientaccessible"form—as their physician(s) and care team throughout their journey (process)in healthcare. However, making the right decisions about the care of individualpatients at the right time and place is a challenge for healthcare professionals. Due tointeroperability issues, existing information systems do not support a seamless flowof patient information along the patient process. Healthcare professionals are thereforeunable to easily access up-to-date information about the patient at the right timeand place. The situation is complicated further by the fragmentation of medical evidencein different repositories and its presentation by diverse providers, each withunique ideas about how information should be organized and how search enginesshould function. Limited or no access to relevant patient information and the bestmedical evidence about the benefits and risks of treatment options can result inflawed decisions and, more seriously, the suffering of patients. The situation also affectsSDM. If patients are not informed about their health condition, treatment options,benefits and risks or not given high quality information, e.g., becausehealthcare professionals do not have access to the best evidence, patients will be unIIable to assess 'what it is important to them', or they will make inadequate decisionsabout key issues. Consequently, it is almost impossible to practice EBM and SDM ineveryday clinical care.

For EBM and SDM to serve their purpose, healthcare professionals and patients needinformation systems that provide quick and trouble-free access to all-round information.They also need information systems that can influence the patient/physicianrelationship and facilitate their pursuance of shared goals in the healthcare process,taking into account both illness and personal experience. Hence, based on a qualitativeapproach, this thesis proposes recommendations regarding the redesign of futurehealthcare information systems in ways that will facilitate, rather than hinder,the access to relevant information. One important recommendation identified is thatfuture healthcare information systems must support the core characteristics of EBMand SDM, in an integrated manner, and using the one without the other is notenough. However, such support requires the adoption of a process view on informationsystem development based on the patient's process. A process-oriented approachwith supporting information systems is thus vital for the support of an evidence-based practice where the patient is an important and active collaborator.Moreover, the challenges identified with regard to information system support arenot exclusively technical. Organizational culture, and the attitudes of healthcare professionalsto patient involvement are some of the biggest challenges facing healthcareorganizations.

Place, publisher, year, edition, pages
Göteborg: BrandFactory AB , 2018.
Series
Dissertation Series ; 19 (2018)
National Category
Information Systems
Research subject
Information Systems
Identifiers
URN: urn:nbn:se:his:diva-15210ISBN: 978-91-984187-1-2 (print)OAI: oai:DiVA.org:his-15210DiVA, id: diva2:1211854
Public defence
2018-05-22, Skövde, 13:00 (English)
Opponent
Available from: 2018-06-12 Created: 2018-05-31 Last updated: 2018-06-14Bibliographically approved
List of papers
1. Towards effective and efficient information system support for healthcare processes: A healthcare practitioner perspective
Open this publication in new window or tab >>Towards effective and efficient information system support for healthcare processes: A healthcare practitioner perspective
2015 (English)In: IADIS International Journal on Computer Science and Information System, ISSN 1646-3692, E-ISSN 1646-3692, Vol. 10, no 1, p. 80-96Article in journal (Refereed) Published
Abstract [en]

Healthcare processes require the cooperation of different healthcare providers and medical disciplines. In such an environment, the quality and safety of care rely heavily on the ability to exchange information from one software to another, and from one person to another. However, information systems that support a seamless flow of information along healthcare processes are not broadly used in healthcare environments. Usually, healthcare organizations have their own autonomously developed information systems that do not support the cooperation of different organizational units and medical disciplines. This has led to the fragmentation of the patients’ information in proprietary heterogeneous systems across healthcare organizations. The aim of this paper is to: (1) explore how healthcare practitioners´ in Sweden experience information system support in their daily work activities, and (2) present and illustrate how key design principles of a process support system prototype can support healthcare practitioners in their work practice. An important conclusion from this research is that a process support as the one described in this paper creates new opportunities to organize and coordinate healthcare.

Place, publisher, year, edition, pages
IADIS Press, 2015
Keywords
Healthcare Processes, Patient Process, Process Support Systems, Information Systems in Healthcare
National Category
Information Systems
Identifiers
urn:nbn:se:his:diva-11422 (URN)000361965300007 ()
Available from: 2015-08-25 Created: 2015-08-25 Last updated: 2018-06-14Bibliographically approved
2. Web-based Knowledge Portals in Swedish Healthcare: Overview and Challenges
Open this publication in new window or tab >>Web-based Knowledge Portals in Swedish Healthcare: Overview and Challenges
2012 (English)In: Scandinavian Conference on Health Informatics 2012 / [ed] Daniel Karlsson, Johan Gustav Bellika, Pia Britt Elberg, Mariann Fossum, Gert Galster, Gunnar Hartvigsen, Sabine Koch, Gunilla Nilsson, Linköping University Electronic Press, 2012, p. 9-12Conference paper, Published paper (Refereed)
Abstract [en]

Healthcare organizations are increasingly becoming dependent on knowledge management activities to improve the quality of care, to maintain a high level of efficiency and innovation as well as to flexibly adapt to raid change. Utilizing knowledge management support systems - e.g. Internet based knowledge portals - to manage medical information and healthcare knowledge aimed to support the full spectrum of knowledge needs has become an important issue for all healthcare professionals. This paper reports on the main findings from analyzing the characteristics and challenges of 15 Swedish knowledge portals containing healthcare information. The analysis is based on inspection of the portals and interviews with their owners. The main challenges found concern fragmentation of knowledge, structuring of knowledge content, usability, interaction and resources for maintaining knowledge content. Future successful development and use of knowledge portals to disseminate healthcare knowledge depend on addressing these challenges, which requires portal owners to have a long-term strategy as well as a systematic way of working.

Place, publisher, year, edition, pages
Linköping University Electronic Press, 2012
Series
Linköping Electronic Conference Proceeding, ISSN 1650-3686 ; 70
Keywords
Knowledge management, knowledge portal
National Category
Computer and Information Sciences
Research subject
Technology
Identifiers
urn:nbn:se:his:diva-6914 (URN)978-91-7519-758-6 (ISBN)
Conference
Scandinavian Conference on Health Informatics 2012, October 2–3, Linköping, Sverige
Available from: 2012-12-14 Created: 2012-12-14 Last updated: 2018-06-14Bibliographically approved
3. Challenges to Implementing IT Support for Evidence Based Practice Among Nurses and Assistant Nurses: A Qualitative Study
Open this publication in new window or tab >>Challenges to Implementing IT Support for Evidence Based Practice Among Nurses and Assistant Nurses: A Qualitative Study
2017 (English)In: Journal of Electronic Commerce in Organizations, ISSN 1539-2937, E-ISSN 1539-2929, Vol. 15, no 2, p. 61-76Article in journal (Refereed) Published
Abstract [en]

When practitioners make decisions as well as treat and care for patients they interpret patient specific information according to evidence based medical knowledge. This process is complex as evidence is infrequently available in a form that can be acted upon at the time decisions must be made. The aim of this paper is to (1) explore how primary, secondary and municipality care in Sweden work with the process of managing knowledge, (2) explore how nurses and assistant nurses experience availability of medical knowledge when and where they need it and (3) conditions for developing a coherent IT-based knowledge portal for different areas of knowledge bases in healthcare. The results show significant deficiencies in the knowledge management process of the participating organizations. The knowledge management processes are not embedded in business processes, activities and relationships, which cause major difficulties for practitioners to keep up with the latest medical evidence.

Keywords
Evidence based medicine, Nursing, Knowledge management, Healthcare information systems, Healthcare knowledge management
National Category
Computer and Information Sciences
Research subject
Information Systems
Identifiers
urn:nbn:se:his:diva-13463 (URN)10.4018/JECO.2017040105 (DOI)000408645700006 ()2-s2.0-85016057982 (Scopus ID)
Available from: 2017-03-30 Created: 2017-03-30 Last updated: 2018-06-14Bibliographically approved
4. Patients' Experiences of Communicating with Healthcare - an Information Exchange Perspective
Open this publication in new window or tab >>Patients' Experiences of Communicating with Healthcare - an Information Exchange Perspective
2011 (English)In: Proceedings of the 15th International Symposium on Health Information Management Research (ISHIMR 2011) / [ed] Bath, P. A., Mettler, T., Raptis, D. A. & Sen, B. A., University of Zurich , 2011, p. 241-251Conference paper, Published paper (Refereed)
Abstract [en]

Aims: To explore on how patients experience the information exchange with healthcare organizations and how this relates to the six areas that constitute good quality care.Method: A qualitative approach inspired by Grounded Theory was adopted. Seven interviews with patients were carried out in the homes of patients.Conclusion: Healthcare does not always meet the requirements of Health and Medical Services Act with regard to good quality health. An effective exchange of information between health professionals and patients was found as a key issue for creating the conditions for good quality care.

Place, publisher, year, edition, pages
University of Zurich, 2011
Keywords
Good quality health, information exchange, IT in healthcare, patient process
National Category
Computer and Information Sciences
Research subject
Technology
Identifiers
urn:nbn:se:his:diva-5682 (URN)978-0-9559283-1-4 (ISBN)
Conference
15th International Symposium on Health Information Management Research (ISHIMR 2011)
Available from: 2012-04-04 Created: 2012-04-04 Last updated: 2018-06-14Bibliographically approved
5. Cancer Patients’ Attitudes and Experiences of Online Access to their Electronic Medical Records: A Qualitative Study
Open this publication in new window or tab >>Cancer Patients’ Attitudes and Experiences of Online Access to their Electronic Medical Records: A Qualitative Study
2018 (English)In: Health Informatics Journal, ISSN 1460-4582, E-ISSN 1741-2811, Vol. 24, no 2, p. 115-124Article in journal (Refereed) Published
Abstract [en]

Patients’ access to their online medical records serves as one of the cornerstones in the efforts to increase patient engagement and improve healthcare outcomes. The aim of this paper is to provide in-depth understanding of cancer patients’ attitudes and experiences of online medical records, as well as an increased understanding of the complexities of developing and launching e-Health services. The study result confirms that online access can help patients prepare for doctor visits and to understand their medical issues. In contrast to the fears of many physicians the study shows that online access to medical records did not generate substantial anxiety, concerns or increased phone calls to the hospital

Place, publisher, year, edition, pages
Sage Publications, 2018
Keywords
Electronic medical records, medical information, patient access, patient empowerment
National Category
Information Systems, Social aspects
Research subject
Humanities and Social sciences
Identifiers
urn:nbn:se:his:diva-12806 (URN)10.1177/1460458216658778 (DOI)000432068300001 ()27440056 (PubMedID)2-s2.0-85046829118 (Scopus ID)
Available from: 2016-08-22 Created: 2016-08-22 Last updated: 2018-06-14Bibliographically approved
6. Supporting Active Patient and Health Care Collaboration: A Prototype for Future Health Care Information Systems
Open this publication in new window or tab >>Supporting Active Patient and Health Care Collaboration: A Prototype for Future Health Care Information Systems
2016 (English)In: Health Informatics Journal, ISSN 1460-4582, E-ISSN 1741-2811, Vol. 22, no 4, p. 839-853Article in journal (Refereed) Published
Abstract [en]

This article presents and illustrates the main features of a proposed process-oriented approach for patient information distribution in future health care information systems, by using a prototype of a process support system. The development of the prototype was based on the Visuera method, which includes five defined steps. The results indicate that a visualized prototype is a suitable tool for illustrating both the opportunities and constraints of future ideas and solutions in e-Health. The main challenges for developing and implementing a fully functional process support system concern both technical and organizational/management aspects.

Place, publisher, year, edition, pages
Sage Publications, 2016
Keywords
e-health services, patient centred care, process oriented approach, process support systems, prototype development
National Category
Information Systems
Research subject
Technology
Identifiers
urn:nbn:se:his:diva-11377 (URN)10.1177/1460458215590862 (DOI)000389055600005 ()26261220 (PubMedID)2-s2.0-84995777290 (Scopus ID)
Projects
Vårdens framtida informationsssystem
Available from: 2015-08-19 Created: 2015-08-19 Last updated: 2018-06-14Bibliographically approved
7. Process oriented information systems: A key to evidence based medicine
Open this publication in new window or tab >>Process oriented information systems: A key to evidence based medicine
2015 (English)In: IADIS International Journal on Computer Science and Information System, ISSN 1646-3692, E-ISSN 1646-3692, Vol. 10, no 1, p. 64-79Article in journal (Refereed) Published
Abstract [en]

The primary and basic component of healthcare is information. Being a healthcare practitioner involves using medical knowledge and patient information to deliver the best possible care. When decisions about the care of the patient are made they must as far as possible be based on research-derived evidence rather than on clinical skills and experience alone. This decision process is complex as evidence is infrequently available in a form that can be acted upon at the time decisions must be made. The aim of this paper is to present and illustrate how a prototype visualization of a process support system can support the availability of relevant medical knowledge in a way which seamlessly integrates with healthcare practitioners work practice, and thereby enables healthcare practitioners to work in accordance with EBM. An important conclusion from this research is that a process support as the one described in this paper can reshape the practice of EBM.

Place, publisher, year, edition, pages
IADIS Press, 2015
Keywords
Medical guidelines, Medical decision support, Process Support Systems, Process Oriented Approach, Knowledge Management Systems, Evidence Based Medicine
National Category
Information Systems
Identifiers
urn:nbn:se:his:diva-11421 (URN)000361965300006 ()
Available from: 2015-08-25 Created: 2015-08-25 Last updated: 2018-06-14Bibliographically approved
8. Information Systems for the Practice of Evidence-Based Medicine and Shared Decision Making
Open this publication in new window or tab >>Information Systems for the Practice of Evidence-Based Medicine and Shared Decision Making
2016 (English)In: Proceedings of the 10th European Conference on Information Systems Management: The University of Ebora, Portugal, 8-9 September 2016 / [ed] Paulo Silva, Rui Quaresma, António Guerreiro, Academic Conferences and Publishing International Limited, 2016, p. 258-270Conference paper, Published paper (Refereed)
Abstract [en]

Evidence-based medicine (EBM) and shared decision making (SDM) are both essential for the quality of healthcare. Using information systems to support EBM and SDM has been proposed as one of the important initiatives to significantly improve quality of care. They play a crucial role by allowing healthcare practitioners to access information and clinical evidence while formulating their patient care strategies. They can also create new opportunities for patients to participate actively in their care. However, current information systems solutions are far away from this perspective for various reasons.  The aim of this paper is to present and illustrate how a prototype visualization of a process support system (PSS) can enhance the communication and collaboration among healthcare providers and patients by improving the access to patient information and medical knowledge, in so doing support the practice EBM and SDM. An important conclusion from this research is that a process support as the one described in this paper can reshape the practice of EBM and SDM.

Place, publisher, year, edition, pages
Academic Conferences and Publishing International Limited, 2016
Series
-, ISSN 2048-8912
Keywords
Process support systems, patient empowerment, evidence based medicine, shared decision making
National Category
Information Systems
Identifiers
urn:nbn:se:his:diva-13419 (URN)000400275000031 ()2-s2.0-85016128883 (Scopus ID)978-1-911218-05-0 (ISBN)
Conference
10th European Conference on Information Systems Management: ECISM, Evora, Portugal, September 8-9, 2016
Available from: 2017-03-08 Created: 2017-03-08 Last updated: 2018-06-14Bibliographically approved

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