Is ‘Patient's Online Access to Health Records’ a Good Reform? – Opinions from Swedish Healthcare Professionals Differ

Abstract

Patients’ access to their own electronic health record is a controversial issue. Many care professionals are concerned about negative effects deriving from patients reading their record information without support from clinicians. Patients on the other hand often think their concerns are outweighed by the benefits. In Sweden a pilot county has provided the health record online to its 350 000 patients for 2.5 years. This study highlights one of the most important questions to handle before and during implementation of such public eHealth services; the opinions of the care professionals regarding online records as a good reform. Results from three questionnaires to various care professions show that opinions from healthcare professionals differ not only between the professions but more importantly also between those who have experience from their patients reading their health record online and those who to date have no real experience. The experienced staff was more positive. This study concludes that in order to provide for successful national implementation, it is important to quickly elicit and disseminate opinions of care professionals with real experience to their unexperienced peers. Healthcare professionals should also be more involved in the implementation of Public eHealth services that regard electronic health records and their work processes.

Full text

Procedia Computer Science 64 ( 2015 ) 964 – 968
1877-0509 © 2015 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license
(http://creativecommons.org/licenses/by-nc-nd/4.0/).
Peer-review under responsibility of SciKA - Association for Promotion and Dissemination of Scientific Knowledge
doi: 10.1016/j.procs.2015.08.614
ScienceDirect
Available online at www.sciencedirect.com
Conference on ENTERprise Information Systems / International Conference on Project
MANagement / Conference on Health and Social Care Information Systems and Technologies,
CENTERIS / ProjMAN / HCist 2015 October 7-9, 2015
Is ‘patient’s online access to health records’ a good reform?
– Opinions from Swedish healthcare professionals differ
Isabella Scandurraa
*
, Anette Janssonb, Marie-Louise Forsberg-Franssonb, Ture Ålanderc
aÖrebro University, School of Business,Dept of Informatics, 701 82 Örebro, Sweden
bRegion Örebro County, 703 62 Örebro, Sweden
cUppsala University, Dept of Public Health and Caring Sciences, Box 564, 751 22 Uppsala, Sweden
Abstract
Patients’ access to their own electronic health record is a controversial issue. Many care professionals are concerned about
negative effects deriving from patients reading their record information without support from clinicians. Patients on the other
hand often think their concerns are outweighed by the benefits. In Sweden a pilot county has provided the health record online to
its 350 000 patients for 2.5 years. This study highlights one of the most important questions to handle before and during
implementation of such public eHealth services; the opinions of the care professionals regarding online records as a good reform.
Results from three questionnaires to various care professions show that opinions from healthcare professionals differ not only
between the professions but more importantly also between those who have experience from their patients reading their health
record online and those who to date have no real experience. The experienced staff was more positive. This study concludes that
in order to provide for successful national implementation, it is important to quickly elicit and disseminate opinions of care
professionals with real experience to their unexperienced peers. Healthcare professionals should also be more involved in the
implementation of Public eHealth services that regard electronic health records and their work processes.
© 2015 The Authors. Published by Elsevier B.V.
Peer-review under responsibility of SciKA - Association for Promotion and Dissemination of Scientific Knowledge.
Keywords: Electronic Health Record; Health Personnel; Professional-Patient Relations; eHealth Service; Online Systems; Access to Information;
Patient’s Direct Access; Web Questionnaires; eHealth
* Corresponding author. Isabella Scandurra, Örebro University. Tel.:+4670 3681299
E-mail address: isabella.scandurra@oru.se
© 2015 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license
(http://creativecommons.org/licenses/by-nc-nd/4.0/).
Peer-review under responsibility of SciKA - Association for Promotion and Dissemination of Scientific Knowledge

965
Isabella Scandurra et al. / Procedia Computer Science 64 ( 2015 ) 964 – 968
1. Introduction
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 services1,2. One example is to give patients online access to their own electronic health record (EHR)3.
The conditions for investments in public eHealth services are good in the Northern European countries.
Regarding the introduction of region-wide EHR systems, Sweden has reached far; county councils have introduced
EHRs to 100% of hospitals, primary care and psychiatry. In Europe, the corresponding figures are 65% in total and
for hospitals alone, 81%4.
Further, patients in Sweden have a right to take part of their health records5. The National eHealth Strategy states
that patients should be able to take part of their health records also via Internet6. Thus, all county councils or
healthcare regions in Sweden have decided to make EHRs available online for patients by 2017 i.e. online records as
a national eHealth service4. Also in European directives such a solution is sought for to gain increased patient safety
and security7.
Within the scope of an EU-project, the Uppsala county council in November 2012 deployed such a public eHealth
service to its 350 000 patients as the first trial in Sweden8. Access to your own eHealth record is however a
controversial issue, as many healthcare professionals are concerned about negative effects, such as lack of patients’
privacy, increased workload and patient safety, e.g. in terms of how the information will be understood by patients
when reading the record without support from their clinicians. To date, this pilot county has provided the health
record online for 2.5 years. The aim of this study is to highlight one of the most important questions to handle before
and during implementation of such public eHealth services, i.e. whether the care professionals regard online records
as a good reform.
1.1. Development and deployment of online records in Sweden
Already in 1997 Uppsala County Council in Sweden started a project with the aim to give patients access to their
medical data. The project was called Sustains and had financial support from the European Commission9. A health
information system was developed where patients had direct access to their clinical notes as well as to several other
eServices through a “Healthcare account” similar to a bank account over Internet9. The system was introduced and
used on a solo family practice in Uppsala and tested in clinical practice10. The fast digital development and
experiences from the Sustains project pushed forward a change of the Swedish legislation in 20085, which permitted
the healthcare organizations to give patients direct access to their EHRs including laboratory values and the doctor’s
notes.
As part of the EU-project Sustains8 (ICT-PSP 297206, during 2012-2014), Uppsala County Council extended the
deployment of public eHealth services to a national pilot. The 350 000 patients were given access to their health
records through the national Internet patient portal “My Healthcare Contacts” (www.minavardkontakter.se) and in
November 2014, 56 480 patients had used the eHealth service11. From 2015, the national eHealth organization
(Inera) has taken the responsibility for the public eHealth service. The development and deployment are ongoing
processes in every healthcare region and county council. To date four of 21 regions in Sweden offer parts of their
EHRs as online services for their citizens and four more have planned to introduce the service during 2015 and five
more in 2016, including Örebro region12. Currently, almost 2 200 000 citizens (22%) have chosen to create and
administer their own account on the patient portal, and the online record service has approximately 200 000 active
users12.
It is evident that increased knowledge is essential for successful deployment of public eServices and such
services tend to be challenging to put into practice. Consequently, there is a great interest in evaluation studies
regarding the development and deployment of public eHealth services in general and online records in particular.
1.2. Studies within the research project DOME
The study presented in this article is part of a larger study in the research project, DOME, Deployment of Online
Medical Records and eHealth services in Sweden13. The project was created in July 2012 in order to connect the first

966 Isabella Scandurra et al. / Procedia Computer Science 64 ( 2015 ) 964 – 968
European deployment project8 to a purposive research group consisting of 16 nationally spread researchers from
various scientific fields. This multi-site and multi-disciplinary composition provided a unique opportunity to
highlight the issues from various research aspects through different methods and studies. Currently the senior
researchers cover the areas of information management, human-computer interaction, IT and work environment,
management and business studies, information security, healthcare informatics, medicine, organization theory,
eGovernment, information technology, engineering education and statistics13. Different evaluation studies are taking
place within three work packages, where this work is part of comparisons of surveys directed towards care
professionals in the work package that regards professions and management. Currently other statements from the
data-sets are jointly being analyzed by statistics, clinical and healthcare informatics researchers and students.
The statement handled in this study aims to discover whether care professionals agree on this eHealth service
being a good reform. And, do experiences from the pilot county result in other opinions compared to the regions
where online records are not yet implemented?
2. Methods
This study collected data from three similar 5-graded Lickert scale web questionnaires to Swedish healthcare
staff and was focused on opinions of physicians (Q1), nurses (Q2) and all licensed professionals (Q3) that document
in the EHRs. Ethical approval for Q1 was made by the Uppsala County’s research units. Q1, Q2 and Q3 were
conducted according to the principles of the Declaration of Helsinki.
Q1 was sent out in June 2013 to 1600 physicians in Sweden with a response rate of 25% (399 respondents). Q2
was sent out in March 2014 to 8460 registered nurses and midwifes in Sweden with a response rate of 35,4% (2867
respondents) and Q3 was sent out in December 2013 as a pilot study in the Örebro region to 100 licensed staff, with
a response rate of 45%. The questionnaires consisted of background questions and about 5 sets of items and free text
fields to each set. To deliver the web questionnaires the regions’ and the Swedish Association of Health
Professionals’ internal web survey tools (Webropol and esMaker) were used. The missive letter stated e.g. that
responding was voluntary and that time spent to respond according to the strongly agree (5) - strongly disagree (1)-
scale was approximately 10 minutes.
To analyze data, standard data reports were initially created for each questionnaire with charts showing the most
prominent differences in each statement. The statement “Is online patient access to health records a good reform?”
was posed in all three questionnaires and was hence selected for further analysis in this paper. Differences and
similarities between professions regardless of geographical sites as well as between different regions were possible
to analyze here as a first step of a complete comparison of the content of the three questionnaires. The Mann-
Whitney ranksum and CHI2 tests were used for evaluating the statistical significance for ordinal and nominal data,
respectively. The data was analyzed by the Stata statistical package 13.1 [10].
3. Results
The results show how statement responses differed between staff that had experience of patients using online
records and those who were unexperienced. In general, professionals’ opinions of patients reading their health
record online were neither entirely positive nor negative (nurses median=3), although physicians were generally
more negative to the reform (median=1). The specific statement analyzed in this study was “Is online patient access
to health records a good reform?” The responses were summarized from the national surveys (Q1 and Q2) in table 1,
and validated by the pilot study (Q3) regarding answers from nurses and physicians.
Table 1. Is online patient access to health records a good reform?
Strongly disagree: 1
2
3
4
Strongly agree: 5
Median
Q1: Physicians (385)
60%
22%
12%
4%
2%
1
Q2: Nurses, all other (2729)
17%
24%
34%
15%
10%
3
Q2: Nurses, Pilot (241)
12%
16%
33%
21%
19%
3

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Isabella Scandurra et al. / Procedia Computer Science 64 ( 2015 ) 964 – 968
Nurses in the pilot county with experience of the online records were significantly more positive to the reform
(p<0.001) than nurses outside the pilot. 40% stated they agreed or strongly agreed to patients receiving free online
access to health records compared to nurses in the rest of the country (25%) as well as to the physicians where 82%
strongly disagreed or disagreed. As a response of the background questions of the web questionnaire, 61 doctors of
399 (15%) stated that they for themselves or their relatives had personal experience of using this eHealth service. A
sub analysis revealed that the own usage was equal between hospital and primary care physicians, females and
males, but the users were younger (p=0.0004). Physicians using the eHealth service themselves, compared to non-
users, found the eHealth service being a good reform to a greater extent (p=0.003) and found the launch of the
reform better (p=0.019).
4. Discussion
The professionals with personal experience of the online record were significantly more positive to the reform
than their peers without experience. A hypothesis is that the experienced staff in the pilot county has not
experienced an increased workload or has noticed that access gives a positive effect when meeting the patient. This
needs to be studied further, possibly via interviews with the experienced staff. There were also differences between
the professions: the nurses with experience of the service were generally more positive compared to the physicians
in the same region.
However, the questionnaires were implemented on three separate occasions which need to be taken into
consideration when analyzing the data. Further, the statement as written in Swedish differed a little between the pilot
questionnaire and the other two, i.e. Is online patient access to health records a good service respectively reform?
Here we considered the responses comparable, whereas the time spent between the questionnaires (9 months) does
cause an uncertainty regarding comparability between the professions. The longer usage for nurses compared to
physicians may have given the nurses a more positive attitude to the eHealth service. Future work would be to
perform another national survey where physicians and other care professionals respond in parallel. Extending the
Örebro pilot study (Q3) to a region-wide survey would also be interesting.
Knowledge about the context in which this deployment process took place is worth mentioning. During the
deployment project, representatives of the physicians’ local union in the pilot county have expressed a distrust of the
online record service whereas the Swedish Association of Health Professionals (for the nurses and midwifes) has
embraced the development and deployment of such eHealth services. It is possible that the differences in the
opinions held by the unions on a governing level shines through in the responses by their respective professionals.
Regarding the non-response analyses; the statistical analysis of Q2 showed that non-negative and negative
towards the eHealth service as a reform were evenly spread among all responding groups, which indicates that there
is no systematic loss depending on whether the respondent is negative or non-negative to the eHealth service as a
reform. In the Q2 study only 5% of the physicians answered the questionnaire and there should be a non-response
analysis; maybe the physicians who responded were all negative towards the eHealth service? On the other hand, the
sub analysis of physicians who used the eHealth service for themselves or their relatives is interesting. The users
differ significantly from physicians not using the service. Probably the own usage has a positive influence on the
attitude. The sub analysis indicates that there was no systematic loss due to a specific opinion.
Future work: Regarding the entire questionnaires, physicians and registered nurses generally left more comments
in free text compared to other professions. The comments regarding this statement are still to be analyzed together
with the results of this first analysis. We will also perform analyses of the complete data-sets in order to better delve
into why each profession was supportive or unsupportive of personal access to health records. More results will also
be published based on other research questions.
5. Conclusion
This study aimed to discover whether care professionals agree on this eHealth service being a good reform.
Results from three questionnaires to various care professions show that opinions from healthcare professionals differ
not only between the professions but more importantly also between those who have experience from their patients
having personal access to the health record online and those who to date have no real experience. The former held a

968 Isabella Scandurra et al. / Procedia Computer Science 64 ( 2015 ) 964 – 968
more positive opinion. The recommendation based on this study is therefore to use results of studies like this one as
a basis for information to unexperienced staff, e.g. by delving into the opinions of the proper staff that is about to be
involved in the deployment process of the service. Further, the information could be used when teaching care
professionals and patients how to use the service when the patient wants to take part of it. It is therefore important to
quickly elicit and disseminate opinions of care professionals with real experience. Healthcare professionals should
also be more involved in the implementation of Public eHealth services that regard electronic health records and that
will affect their work processes15. As ICT is increasingly used to supply citizens with various health services, the
challenges for and demands on health and social care organizations need to be studied further, as well as the impact
on healthcare personnel. The main outcome of this study is that healthcare professionals with personal experience of
the new eHealth service are more supportive to online records as a good reform than healthcare professionals
without experience.
Acknowledgements
The action research project “DOME - Deployment of Online Medical Records and eHealth Services” was
financed by VINNOVA (2012-02233) – Swedish Governmental Agency for Innovation Systems. The SUSTAINS
implementation project was supported by the European Commission (No 297206). We would also like to give our
gratitude to the Uppsala County Council and the Region Örebro County for supporting the distribution of the web
questionnaires to the employees and the Swedish Association of Health Professionals for distributing the
questionnaire to their members. Special thanks to all the respondents who participated.
References
1. Hägglund M, Scandurra I, and Koch S. Empowering patients and relatives in elderly care by information access. In proceedings of 6th
International Conference on Information Communication Technologies in Health, 2008, p. 218–223.
2. Koch S. Improving quality of life through eHealth-the patient perspective. Stud. Health Technol. Inform 2012, vol. 180, p. 25–29.
3. Delbanco T, Walker J, Darer JD, Elmore JG, and Feldman HJ, Open Notes : Doctors and Patients Signing On. Ann. Intern. Med 2010 vol. 153,
p. 121–125.
4. Centrum för eHälsa i samverkan, CeHis. ”Action plan 2013-2018, eHealth cooperation of county counties, regions and municipalites”. 2012
In Swedish. http://www.inera.se/Documents/OM_OSS/handlingsplan_2013_2018.pdf Retrieved 2015-04-03.
5. Patient Data Act (SFS 2008:355) http://www.riksdagen.se/sv/Dokument-Lagar/Lagar/Svenskforfattningssamling/Patientdatalag-2008355_sfs-
2008-355/ Retrieved 2015-04-03.
6. Ministry of Health and Social Affairs. National eHealth – the Strategy for Accessible and Secure Information in Health and Social Care, 2010.
http://www.nationellehalsa.se/Content/Cms/img/temp/National%20eHealth%202010.pdf. Retrieved 2015-04-03.
7. European Commission. eHealth Action Plan 2012-2020 – Innovative healthcare for the 21st century. Retrieved 2015-04-03
http://ec.europa.eu/health/ehealth/docs/com_2012_736_en.pdf
8. Lyttkens L. SUSTAINS Intermediate trial evaluation – Uppsala, Report D6.1 v1.1, 14 Jan 2014. Project site: http://www.sustainsproject.eu/.
http://www.sustainsproject.eu/sustainsproject/attachment/d61v1 Retrieved 2015-04-03.
9. Eklund B. and Joustra-Enquist I. Sustains--direct access for the patient to the medical record over the Internet. Stud Health Technol Inform
2004, vol 100, p. 182-189
10. Ålander, T. Eklund, B. and I. Joustra-Enquist. Projekt Sustains – Journaltillgång över Internet. AllmänMedicin 2004: 6: 11-13.
11. Statistics about “My health record” http://www.lul.se/sv/Extranat/For_vardgivare/MOT-PATIENTEN/Sjukvard1/Journal-via-natet-min-
journal-i-U-a-lan/Statistik/ Retrieved 2015-06-10.
12. Inera . Journalen. http://www.inera.se/TJANSTER--PROJEKT/Journalen/Inforande/ Last updated 2015-03-23. Retrieved 2015-06-10.
13. Scandurra I, Åhfeldt R-M, Cajander Å. Towards National Deployment of Medical Records and eHealth Services. In Proceedings of VITALIS
– Nordic leading eHealth meeting 2014. Göteborgs Universitet; 2014, p.14-17. https://gupea.ub.gu.se/bitstream/2077/35435/2/
gupea_2077_35435_2.pdf Retrieved 2015-04-03. The project web site is: https://projectdome.wordpress.com/ Retrieved 2015-04-03.
14. Stata Statistical Software. Release 13.1 ed. College Station, TX: Stata Corporation 2014
15. Scandurra I, Holgersson J, Lind T, and Myreteg G. Development of Patient Access to Electronic Health Records as a Step Towards
Ubiquitous Public eHealth Eur. J. ePractice; From eHealth to mHealth, vol. 20, 2013.