As early e-health efforts progress, it is critical to step back to study their effectiveness and inform expanded implementation. The DOME project is a Swedish research initiative to examine the methods and implications of providing patients access to their own medical records and other e-health services. The focus is on SUSTAINS, a patient access system established in 2012 in 11 European countries. Sweden’s Uppsala county opened access to residents to view their electronic health records with provider notes, lab results, diagnoses and treatments in late 2012. Pre- and post-implementation studies are being carried out through DOME and mixing with the public debate on benefits and drawbacks of easy online access to personal health information. Supporters and critics share concern for quality of care and data security. But advocates focus on better decisions by empowered patients, while detractors, including many healthcare providers, see patient anxiety resulting from insufficient information and lack of consultation. The DOME project is providing the opportunity to analyze all sides of expanded access to electronic health records.

health information
medical records
personal information
information access
psychological aspects
Sweden

Bulletin, June/July 2013


Empowerment or Anxiety? Research on Deployment of Online Medical E-health Services in Sweden

by Isto Huvila, Gunilla Myreteg and Åsa Cajander

Development and deployment of e-health services and patient access to medical information is currently a priority all around the world. This attention is due to the increase in healthcare expenditures that is being experienced in the industrialized countries. In Sweden the first attempts to implement online access to medical records for patients were made in the 1990s [1]. However, the process has only recently accelerated due to necessary changes in legislation and also through the launch of extensive regional and national initiatives. In 2012 a major Swedish-lead, EU-funded project, SUSTAINS (Support USers To Access INformation and Services), was launched to implement a patient access system in 11 European countries. Earlier experience with such initiatives has shown that an effective deployment of relevant and successful services needs to be based on a thorough understanding of the technical, societal and organizational contexts of these implementations [2] [3]. In spite of the large number of studies in the field, the dynamics of the different factors is not fully understood. In this respect, SUSTAINS represents a unique national and international context of study for researchers to develop urgently needed theoretical and directly applicable knowledge, as well as guidelines for informing future implementations.

This paper will briefly present the DOME project, a major Swedish research initiative, that was founded to exploit the research potential of SUSTAINS and simultaneously to address the broad research needs in the field of e-health. The aim of DOME is to gather systematic evidence on the national and European-wide implementation of online patient access to electronic health records and e-health services. The article will also highlight some early findings from the project and offer some observations on the public discussion that was started in Sweden by the implementation of the online service. 

The DOME Project
DOME is a collaborative research project among Lund University, the University of Skövde and Uppsala University (all in Sweden), consisting of researchers representing different fields of scholarship including, for example, management accounting, information technology, information and knowledge management and medicine. The purpose of the project is to create and disseminate knowledge about implementation and use of e-health services based on studies of on-going implementation projects. During the initial phase of DOME, the research focus has been on SUSTAINS and the deployment of e-health services in the Swedish counties of Uppland and Norrland and comparative research in the regions of Skåne and Västgötaland. Due to the complexity of the research context and the large number of stakeholders across society in the field of e-health, the practical relevance of the research findings is considered to be critical for the success of the project. 

In order to ensure that the research is firmly anchored in practice, the DOME project has invested much effort in developing an effective network of reference groups. Currently, 25 national and regional organizations participate at different levels in the consultative activities. One goal of the reference groups is to help the DOME researchers identify, understand and highlight the practical problems and possibilities with e-health services from different perspectives. Another goal is to feed back the results of the research project to the national development of e-health services. A specific practical goal of the DOME project is to establish a stable and empirically informed base for the next phase: a national implementation of e-health services. In this phase, the service models and solutions developed in SUSTAINS [4] in the counties of Uppland and Norrland are going to be diffused nationwide. The DOME project perceives the reference groups as important channels for disseminating its research results and as valuable resources for performing collaborative work in developing practice guidelines and recommendations for future, practical work. 

In order to make use of SUSTAINS for empirical research the DOME project has initiated a research collaboration with the European partners. In the SUSTAINS effort the County Council of Uppsala (LUL) is the coordinator of 16 partners in 11 countries. Norrbotten County Council is another Swedish partner of SUSTAINS that also works with the development of different e-health services.

Online Access to Medical Records
In the autumn of 2012 LUL gave all patients in the county access to their personal electronic medical records, together with a number of other e-health services, online. LUL is the first county in Sweden to offer this e-health service. 

The online access to medical records enables patients in LUL to access and read their electronic health records (EHR) containing information such as appointment bookings, medical notes, drug prescriptions, medical lab results, diagnoses, referrals and log lists with names of medical staff who have accessed the records. For testing purposes, a minor launch limited to employees at the county was made in August 2012. This test phase was followed by a complete launch covering all patients in the county of Uppsala. In April 2013 over 18,000 patients out of the population of 200,000 inhabitants had read their EHR in a total of 67,102 sessions. 

Empowerment or Anxiety?
The early research studies of the DOME project have so far focused on implementation of online access to medical records and development of related new e-health services in the County Council of Uppsala (LUL) in Sweden. This implementation is a central part of the SUSTAINS project. The pre- and post-implementation studies in the county of Uppsala have been complemented with comparative baseline research in other parts of the country. In the next phase the aim is to follow the implementations in other county councils in Sweden and, in collaboration with international research partners, in other European countries. 

Not entirely unexpectedly, considering the findings published in earlier literature [5], online access to medical records has led to a debate in media. Proponents of the system regard it as a means to change the role of the patient in the healthcare system. The proponents emphasize potentially positive outcomes of patient empowerment. Whereas such interested parties as politicians and managers in healthcare organizations tend to be primarily positive toward the idea of online access to the EHRs, there is a notable divide among the healthcare professionals. Some professionals have been very positive toward the initiative, but at the same time many have expressed concerns regarding implementation of the EHR. Even if most critical voices in the public debate have belonged to professionals, findings of the DOME project show some patients also share the anxiety. At the moment it seems that in general, the opinions of the patients seem to vary the most. Some patients are indeed very positive about the possibilities offered by the EHR and the opportunities to have a say. At the same time, other patients are not sure whether they would benefit at all from consulting their medical records, and some are concerned with the security of the service. 

An interesting aspect of the controversy in the media is that the proponents as well as the critics of the online access to the EHRs refer to largely similar arguments. They both express a concern for quality of care and security, for example. Those in favor of allowing citizens to access their medical records online regard the consequent empowerment of patients and their possibilities to take charge of their health as a central means to improve the quality of care. Informed patients are assumed to be better equipped to make decisions about their health care, treatments and lifestyle. Empowerment has also been suggested to lead to a deeper engagement in personal health care and to a more meaningful implementation of informed consent. The patient’s access to the record is also expected to yield more accurate information in the EHR, since the patient can spot mistakes and make them known to the doctor. In the long run, the changing role of the patients is expected to lead to healthier lives of citizens as well as a more effective use of healthcare resources. 

The critics have expressed their concerns regarding, for instance, how some patients might become anxious after reading about preliminary diagnoses without having someone to talk to or how some individuals might misunderstand the medical record and take actions that even might compromise their health and safety. Other critical arguments relate to the possibility of an unauthorized or ineligible access to, or misuse of, data. All of these issues are said to have a potentially negative effect on the quality of health care. At the same time, many professionals have expressed their concerns about the current implementation process and how the implications of the new system for the occupational safety and work environment of healthcare professionals were neglected. The anticipated problems in working conditions would also, according to them, lead to a poorer quality of care. In order to reduce the risk of patient anxiety it has been suggested, for instance, that doctors should have sufficient time to consult a colleague and complete notes before new entries in records become accessible to patients. There are also patient and staff safety concerns related to providing access to the medical records of some psychiatric patients, which is an issue that was treated also in the earlier literature [6].

At present, the initial hypothesis of the DOME project finds strong support; there is great need for multi- and interdisciplinary research on the deployment of e-health services. In order to develop and understand the current and future processes in e-health, it is necessary to apply a simultaneous consideration of how technical, professional, political and patient-related concerns are linked. The DOME research has already shown this linkage to be an important factor for the success of the initiatives. In the next stage of the DOME research the aim is to track the implementations in other county councils in Sweden as well as in other European countries. The DOME researchers, through the European-wide SUSTAINS project and its national deployment projects in Sweden, have been given a unique opportunity to analyze the contingencies, opportunities, threats and implications related to the development and implementation of online access to EHRs and other e-health services in projects that are both large in scale and embedded in national and international contexts.

DOME project
More information about the DOME project can be found at www.it.uu.se/research/hci/dome/index.php?lang=1 

Resources Mentioned in the Article
[1] Ålander, T.; Eklund, B. & Joustra-Enquist, I. (2004). Projekt Sustains -- Journaltillgång över Internet. AllmänMedicin, 25 (6), 11-13. [“The Sustains project - online access to patient records” – article written in Swedish.]

[2] Vaart van der, R., Drossaert, C. H., Taal, E., & Laar van de, M. A. (March 28, 2012) Giving rheumatology patients online home access to their electronic medical record (EMR): Advantages, drawbacks and preconditions according to care providers. Rheumatology International. Retrieved May 28, 2013, from http://link.springer.com/article/10.1007/s00296-012-2408-2/fulltext.html 

[3] Hackl, W. O., Hoerbst, A. & Ammenwerth, E. (2011). "Why the hell do we need electronic health records?": EHR acceptance among physicians in private practice in Austria: A qualitative study. Methods of Information in Medicine, 50 (1), 53-61.

[4] SUSTAINS: www.sustainsproject.eu 

[5] Ammenwerth, E., Schnell-Inderst, P. & Hoerbst, A. (2012). The impact of electronic patient portals on patient care: A systematic review of controlled trials. Journal of Medical Internet Research, 14 (6), e162. 

[6] Brakoulias, V. (2013). (February 21, 2013). Releasing medical records to the mentally ill: What about the carer? Australian and New Zealand Journal of Psychiatry, 00 (0). Retrieved May 28, 2013 from http://anp.sagepub.com/content/early/2013/02/20/0004867413480409.extract.  


Isto Huvila is an associate professor in the department of archival, library and museum studies, Uppsala University, and in the School of Business and Economics, Åbo Akademi University; he is also a research scientist, DOME. His primary research area is information and knowledge management. He can be reached at Isto.Huvila<at>abm.uu.se.

Gunilla Myreteg is a member of the faculty in the department of business studies, Uppsala University, and is a research scientist, DOME. Her specialty is management accounting. She can be reached at Gunilla.Myrteg<at>fek.uu.se.

Åsa Cajander is a member of the department of information technology, Uppsala University; project manager, DOME. Her principal area is HCI and software development methods. She can be reached at Asa.Cajander<at>it.uu.se.