Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

At a glance: The ONWARDS insulin icodec trials

A round-up of the ONWARDS phase 3 clinical trials evaluating the novel weekly insulin icodec in people with diabetes.
ADVANCED SEARCH
Log in
Top
BMC Medical Informatics and Decision Making
Published in: BMC Medical Informatics and Decision Making 1/2019

Open Access 01-12-2019 | Stroke | Research article

Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform - a case study

Authors: Nadia Davoody, Sabine Koch, Ingvar Krakau, Maria Hägglund

Published in: BMC Medical Informatics and Decision Making | Issue 1/2019

Login to get access

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.
Appendix
Available only for authorised users
Literature
1.
Buntin M, Burke M, Hoaglin M, Blumenthal D. The benefits of health information technology: a review of the recent literature shows predominantly positive results. Health Aff. 2011;30(3):464–71.CrossRef
2.
Hägglund M, Scandurra I, Koch S. Empowering patients and relatives in elderly care by information access. In: In the 6th International Conference on Information Communication Technologies in Health; 2008. p. 218–23.
3.
Koch S. Improving quality of life through eHealth-the patient perspective. Stud Health Technol Inform. 2012;180:25–9.PubMed
4.
Mold F, De Lusignan S, Sheikh A, Majeed A, Wyatt J, Quinn T, et al. Patients' online access to their electronic health records and linked online services: a systematic review in primary care. Br J Gen Pract. 2015;65(632):E141–E51.CrossRef
5.
Leveille SG, Walker J, Ralston JD, Ross SE, Elmore JG, Delbanco T. Evaluating the impact of patients' online access to doctors' visit notes: designing and executing the OpenNotes project. BMC Med Inform Decis Mak. 2012;12:32.CrossRef
6.
Lyttkens L. Support users to access information and services - final pilot evaluation Uppsala County council; 2014.
7.
Scandurra I, Janssonb A, Forsberg-Franssonb M-L, Ålander T. Is ‘patient’s online access to health records’ a good reform? Opinions from Swedish healthcare professionals differ. Procedia Comput Sci. 2015;64:964–8.CrossRef
8.
Palen TE, Ross C, Powers JD, Xu S. Association of online patient access to clinicians and medical records with use of clinical services. JAMA. 2012;308:2012–9.CrossRef
9.
Shah SG, Fitton R, Hannan A, Fisher B, Young T, Barnett J. Accessing personal medical records online: a means to what ends? Int J Med Inform. 2015;84(2):111–8.CrossRef
10.
Ingram D. GEHR: the good European health record. In: Laires MF, Ladeira MJ, Christensen JP, editors. Proceedings of health in the new communications age. Amsterdam: IOS Press; 1995.
11.
Grimson W, Berry D, Grimson J, Stephens G, Felton E, Given P, O’Moore R. Federated healthcare record server – the synapses paradigm. Int J Med Inf. 1998;52:3–27.CrossRef
12.
Grimson J, Stephens G, Jung B, Grimson W, Berry D, Pardon S. Sharing health-care records over the internet. Internet Comput, IEEE. 2001;5(3):49–58.CrossRef
13.
14.
Saracevic T. Relevance: a review of the literature and a framework for thinking on the notion in information science. Part III: behavior and effects of relevance. J Am Soc Inf Sci Technol. 2007;58(13):2126–44.CrossRef
15.
ISO/EN 13606–2, EN 13606–2 Health Informatics - Electronic health record communication - Part 2: Archetypes interchange specification. 2007.
16.
17.
18.
Mandel JC, Kreda DA, Mandl KD, Kohane IS, Ramoni RB. SMART on FHIR: a standards-based, interoperable apps platform for electronic health records. J Am Med Inform Assoc. 2016;23(5):899–908.17.CrossRef
19.
Huckvale K, Prieto JT, Tilney M, Benghozi PJ, Car J. Unaddressed privacy risks in accredited health and wellness apps: a cross-sectional systematic assessment. BMC Med. 2015;13:1.CrossRef
20.
Barbarito F, Pinciroli F, Mason J, Marceglia S, Mazzola L, Bonacina S. Implementing standards for the interoperability among healthcare providers in the public regionalized healthcare information system of the lombardy region. J Biomed Inform. 2012;45(4):736–45.CrossRef
21.
Min L, Wang L, Lu X, Duan H. Case study: applying OpenEHR archetypes to a clinical data repository in a Chinese hospital. Stud. Health Technol. Inform. 2015;216:207–11.PubMed
22.
Xu W, Guan ZY, Sun JH, Wang ZY, Geng YB. Development of an open metadata schema for prospective clinical research (openPCR) in China. Methods Inf Med. 2014;53(01):39–46.CrossRef
23.
Scandurra I, Hägglund M, Persson A, Ahlfeldt RM. Disturbing or facilitating?--on the usability of Swedish eHealth systems 2013. Stud Health Technol Inform. 2014;205:221–5.PubMed
24.
Sellberg N, Eltes J. The Swedish Patient Portal and Its Relation to the National Reference Architecture and the Overall eHealth Infrastructure. in Information Infrastructures within European Health Care, M Aanestad, M. Grisot, O. Hanseth, and P. Vassilakopoulou, Eds. Springer, 2017:225–244.
25.
MacKenzie C, Laskey K, McCabe F, Brown P, Metz R. Reference Model for Service Oriented Architecture 1.0; 2006.
26.
27.
Davoody N, Koch S, Krakau I, et al. Post-discharge stroke patients’ information needs as input to proposing patient-centred eHealth services. BMC Med. Inform. Decis. Mak. 2016;16(1):66.
28.
29.
Lyckstedt Vis S. Användarcentrerad utveckling – Design av rehabiliteringshjälpmedel för strokepatienter. Kungliga Tekniska Högskolan, 2013.
30.
Lundberg N, Koch S, Hägglund M, Bolin P, Davoody N, Eltes J, et al. My care pathways - creating open innovation in healthcare. Stud Health Technol Inform. 2013;192:687–91.PubMed
31.
Hägglund M, Koch S. Commentary: Sweden rolls out online access to medical records and is developing new e-health services to enable people to manage their care. BMJ. 2015;350:h359.CrossRef
32.
Hägglund M, Scandurra I. Patients' online access to electronic health records: current status and experiences from the implementation in Sweden. Stud Health Technol Inform. 2017;245:723–7.PubMed
33.
Scandurra I, Holgersson J, Lind T, Myreteg G. Development of patient access to electronic health records as a step towards ubiquitous public eHealth. Eur J ePract. 2013;20:21–36.
34.
35.
Hagglund M, Scandurra I. A socio-technical analysis of patient accessible electronic health records. Stud. Health Technol. Inform. 2017;244:3–7.PubMed
36.
Scandurra I, Lyttkens L, Eklund B. Implications of Swedish National Regulatory Framework of the patient accessible electronic health record. Stud Heal Technol Inf. 2016;228:695–9.
37.
Scandurra I, Pettersson M, Eklund B, Lyttkens L. Analysis of the updated Swedish regulatory framework of the patient accessible electronic health record in relation to usage experience. Stud. Health Technol. Inform. 2017;245:798–802.PubMed
38.
39.
40.
41.
Reed J, Stanley D. Improving communication between hospitals and care homes: the development of a daily living plan for older people. Health Soc Care Community. 2003;11(4):356–63.CrossRef
42.
Hofflander M, Nilsson L, Eriksén S. Discharge planning: narrated by nursing staff in primary healthcare and their concerns about using video conferencing in the planning session – an interview study. J Nurs Educ Pr. 2013;3(1):88–98.
43.
Lee T. Nursing diagnoses: factors affecting their use in charting standardized care plans. J Clin Nurs. 2005;14(5):640–7.CrossRef
44.
Ammenwerth E, Kutscha U, Kutscha A, Mahler C, Eichstadter R, Haux R. Nursing process documentation systems in clinical routine–prerequisites and experiences. Int J Med Inf. 2001;64:187–200.CrossRef
45.
Bjerkan J, Hedlund M, Hellesø R. Patients' contribution to the development of a web-based plan for integrated care - a participatory design study. Inform Health Soc Care. 2015;40(2):167–84.CrossRef
46.
Bjerkan J, Vatne S, Hollingen A. Web-based collaboration in individual care planning challenges the user and the provider roles – toward a power transition in caring relationships. J Multidiscip Healthc. 2014;7:561–72.CrossRef
47.
Hägglund M, Chen R, Koch S. Modeling shared care plans using CONTsys and open EHR to support shared homecare of the elderly. J Am Med Inform Assoc. 2011;18(1):66–9.CrossRef
48.
Langhorne P, Bernhardt J, Kwakkel G. Stroke rehabilitation. Lancet. 2011;377(9778):1693–702.CrossRef
49.
Maclean N, Pound P, Wolfe C, Rudd A. Qualitative analysis of stroke patients' motivation for rehabilitation. BMJ. 2000;321:1051–4.CrossRef
50.
Tistad M, von Koch L, Sjöstrand C, Tham K, Ytterberg C. What aspects of rehabilitation provision contribute to self-reported met needs for rehabilitation one year after stroke--amount, place, operator or timing? Health Expect. 2013;16(3):e24–35.CrossRef
51.
Wohlin AW, Von Koch L, Tham K. The meaning of rehabilitation in the home environment after acute stroke from the perspective of a multiprofessional team. Phys Ther. 2007;87(6):778–88.CrossRef
52.
Davoody N, Koch S, Krakau I, Hägglund M. Collaborative interaction points in post-discharge stroke care. International Journal of Integrated Care. Int. J. Integr Care. 2014;14(4).
53.
Sumathipala K, Radcliffe E, Sadler E, Wolfe CDA, McKevitt C. Identifying the long-term needs of stroke survivors using the international classification of functioning, Disability and Health. Chronic Illn. 2012;8:31–43.CrossRef
54.
McKevitt C, Fudge N, Redfern J, Sheldenkar A, Crichton S, Rudd AR. Self-reported long-term needs after stroke. Stroke. 2011;42:1398–403.CrossRef
55.
WJ op R, Scholte de Haan RJ, Rijnders PT, Limburg M, van den Bos GA. Unmet care demands as perceived by stroke patients: deficits in health care? Qual Health Care. 1999;8(1).
56.
Bovend’Eerdt T, Botell R, Wade DT. Writing SMART rehabilitation goals and achieving goal attainment scaling: a practical guide. Clin Rehabil. 2009;23(4):352–61.CrossRef
57.
Turner-Stokes L. Goal attainment scaling (GAS) in rehabilitation: a practical guide. Clin Rehabil. 2009;23(4):362–70.CrossRef
58.
Smith J, Forster A, House A, Knapp P, Wright J, Young J. Cochrane Database Syst Rev. n.d.:2012.
59.
Wiles R, Pain H, Buckland S, McLellan L. Providing appropriate information to patients and carers following a stroke. J Adv Nurs. 1998;28(4):794–801.CrossRef
60.
Davoody N, Hagglund M. Care professionals’ perceived usefulness of eHealth for post-discharge stroke patients. Stud Health Technol Inform. 2016;228:589–93.PubMed
61.
Denscombe M. The good research guide [Elektronisk resurs]: for small-scale social research projects. Maidenhead: Open University Press; 2010.
62.
Yin RK. Case study research: design and methods. London: SAGE; 2014.
63.
LeRouge C, Ma J, Sneha S, Tolle K. User profiles and personas in the design and development of consumer health technologies. Int J Med Inform. 2013;82(11):E251–E68.CrossRef
64.
Pruitt J, Adlin T. The persona lifecycle : keeping people in mind throughout product design. San Francisco, CA: Elsevier Academic; 2006.
65.
Manchaiah V, Stephens D, Meredith R. The patient journey of adults with hearing impairment: the patients’ views. Clin Otolaryngol. 2011;36(3):227–34.CrossRef
66.
67.
68.
Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG. Original research inviting patients to read their doctors ’ notes : a quasi-experimental study and a look ahead. Ann Intern Med. 2012;157(7):461–70.CrossRef
69.
Alander T, Scandurra I. Experiences of healthcare professionals to the introduction in Sweden of a public eHealth service: patients’ online access to their electronic health records. Stud Health Technol Inform. 2015;216:153–7.PubMed
Metadata
Title
Accessing and sharing health information for post-discharge stroke care through a national health information exchange platform - a case study
Authors
Nadia Davoody
Sabine Koch
Ingvar Krakau
Maria Hägglund
Publication date
01-12-2019
Publisher
BioMed Central
Keywords
Stroke
Care
Published in
BMC Medical Informatics and Decision Making / Issue 1/2019
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/s12911-019-0816-x

Other articles of this Issue 1/2019

BMC Medical Informatics and Decision Making 1/2019 Go to the issue

Research article

Quality analysis of smart phone sleep apps in China: can apps be used to conveniently screen for obstructive sleep apnea at home?

Research article

Chronic wound assessment and infection detection method

Research article

Evaluating a South African mobile application for healthcare professionals to improve diagnosis and notification of pesticide poisonings

Correction

Correction to: Methods for identifying 30 chronic conditions: application to administrative data

Research article

Treatment recommendations to cancer patients in the context of FDA guidance for next generation sequencing

Research article

Decision tree–based classifier in providing telehealth service