National Quality Registries as a Swedish e-Health System
Amra Halilovic, Informatics Strategist County Council of Dalarna Sweden
[email protected]
In Proceedings of the 18th International Conference on Computers (part of CSCC ’14). Greece, July 17-21, 2014. Abstract - A system of national quality registries (NKRs) has been established in the Swedish health and medical services in the last few decades. Currently, there are 81 NKRs in operation with joint financial support from both the health authorities and the state. Additional registers are planned, or are under construction. Currently, there are 24 so-called registers candidates which operate with financial aid. The purpose of this paper is to investigate whether NKRs can be defined as e-health. An analysis is based on Eyesenbach’s definition of “10 Es in e-health”. The results of this analysis show that NKRs have four major strengths: enhancing quality of care, evidence based, equity and ethics. These Es summarise the purpose with the 81 NKRs and 24 registers candidates in Sweden. Extending the scope and enabling information exchange are two strengths, although limited. Patients have to know where to look and how to find information, which is available within Sweden, but not globally.
Keywords— National quality registries, e-health, e-health system. I.
INTRODUCTION
The National Quality Registers (NKRs) is a system of quality tools used in Sweden, utilized to continuously improve and provide good health care. The NKRs contain individualized data concerning patient problems, medical interventions and outcomes after treatment; encompassing all healthcare production in the country. This data is protected by several laws [1]. Currently (2014) there is a trend emerging among administrators to make register results available to the public via the Internet. Citizens can have direct access to their own care unit quality results, as well as from other care units in the county. In 2008, the Swedish government decided to introduce the health care choices. This means that citizens of any county, when in Sweden, may change care units as often as they want. Health units are not allowed to deny or reject anyone who chooses that unit. According to a recent report from The Swedish National Board of Health and Welfare (“Socialstyrelsen”) many citizens find it difficult to choose. There is no readily available information and the choices can be too complex [2]. NKRs can be used as a solution to this problem. The question is if the usage of NKRs’ results would change the definition of NKRs: Is it possible to define NKR as eHealth?
There are more than 51 definitions of e-health [3] - [6] with Eysenbach being the most quoted [7]: “e-health is an emerging field in the intersection of medical informatics, public health and business, referring to health services and information delivered or enhanced through the Internet and related technologies. In a broader sense, the term characterizes not only a technical development, but also a state-of-mind, a way of thinking, an attitude, and a commitment for networked, global thinking, to improve health care locally, regionally, and worldwide by using information and communication technology.” II. NATIONAL QUALITY REGISTRIES NKRs have a long history. From the beginning, they were created by the individuals who themselves would benefit from them in their professional lives. NKRs are a system of quality tools which aim to continuously improve and provide good health care. This means that healthcare has to be consistent (equal treatment for all patients, throughout the country) and to ensure that treatments are fact based. NKRs contain individualized data concerning patient problems, medical interventions, and outcomes after treatment; within all healthcare production in the country. The individualized data is protected by several laws. NKRs also enable: • Monitoring the progress made in health care, both for the individual patients, as well as at the aggregate group level (for example, a group of cancer patients). • Following patient outcomes per county, hospital or clinic. • Support the health care work (for example, checklists). • Compare healthcare units’ own work over time and identity areas for improvement. • Research based on data from Sweden’s healthcare units. In Sweden there are six Regional Cancer Centres and six Competence Centres. Registers in the cancer field (approximately 20 national quality registers) are organized in six Regional Cancer Centres (RCCs): Norr, Stockholm
Gotland, Syd, Sydöst, Uppsala Örebro och Väst (see Figure 1 below). RCCs work for a more patient-focused, equitable and effective cancer care. These centres receive, encode, record and verify the information annually forwarded from the region to the Cancer Registry at the National Board.
Competence Centres do not have a common technology platform. Hence, continued development of the registries can be assured, although the system follows a decentralized model, i.e. each register is governed by an executive board. Results from NKRs are available to medical units and county management via the Internet; at present citizens do not have access to the results via the Internet. However, recently, there have been some attempts (by some NKRs) to enable reports even to citizens. Results from NKRs are also accessible in the form of reports such as “Open Comparison and Assessment”. These reports are freely available to all, including citizens.
III. SWEDEN IN E-HEALTH
Figure 1: Six Regional Cancer Centres in Sweden (source: SKL)
RCCs have a common goal and full autonomy. There are ten criteria which specify the frame and focus of the RCC activities and its organization: 1. Design and implement a plan for the region regarding prevention and early detection of cancer. 2. Manage and coordinate the region’s work in order to make the cancer care chain more effective. 3. Have a plan which ensures cancer patients have access to psychological support, rehabilitation and good quality palliative care across the region. 4. Strengthen patients' position in their cancer care. 5. Design and implement a plan for the development of the region's cancer care. 6. Reinforce progress towards knowledge-driven cancer care. 7. Strengthen clinical cancer research both in the region and in the country. 8. Have a clear management structure with strong roots within the county, interact with other RCCs and have systems for monitoring cancer care quality. 9. Develop a strategic development plan for cancer care in the region. 10. Develop a plan for cancer care level structuring and support the implementation of the plan. Registers in the cancer field have a common technology platform, owned by county councils/regions, for the management and development of RCC. Six competence centers (“registercentrum”) for the other NKRs (approx. 60) have been established [8]: Registercentrum Norr (RCN), Uppsala Clinical Research Center (UCR), QRC Stockholm, Registercentrum Västra Göteland (RVG), Registercentrum SydOst (RCSO) and Registercentrum Syd. In these competence centres, several registries share the costs of staff and systems which a single registry could not bear, e.g., in technical operations, analytical work, use of registry data to support clinical quality improvement, and helping to make registry data beneficial for different users. These six
Sweden's longstanding commitment to e-health at a regional level was brought together in a national eHealth strategy in 2006. The strategy focuses on: • Patient information being made available across organizational borders. • How ICT can help increase patient safety. • How patient involvement in their own care can be increased[8]. Authorities are interested in the implementation of the National eHealth Strategy and the action plan that the county councils have set up to achieve its targets. This strategy is followed up every year and new goals are set [9]. According to the statistics and several reports Sweden is at the very forefront in the use of ICT for care documentation and care processes [9], [10]. The characteristic feature of the Swedish model is that a shared health record system is used both for primary care and in-patient care. The Electronic Health Record (EHR) and electronic prescriptions have been fully implemented which makes information accessible throughout the care chain [9]. Another characteristic feature of the Swedish model is collaboration between ICT suppliers, customer groups (county councils) and authorities such as the Swedish National Board of Health and Welfare, the Swedish Association of Local Authorities and Regions, etc. [9]. The 21 county councils in Sweden have the responsibility for the development and implementation of ICT. They have had different goals and priorities and have made varying levels of progress in different areas. At the moment there are several programs which aim to increase consolidation and coordination of both national services and other services in the county councils. One example is the National Programme for Data Collection with its overall goal to develop and implement ICT for automatic data transfer from different EHRs to the ca 100 NKRs. IV. THE 10 ES IN “E-HEALTH”, ACCORDING TO EYSENBACH Eysenbach [7] shows that the “e” in e-health does not only stand for “electronic”. The author lists ten other “Es”, which
together best characterize e-health. These are: 1. Efficiency – e-health “promises” to increase efficiency in health care by decreasing costs, for example, by avoiding duplicative or unnecessary therapeutic interventions through patient involvement. 2. Enhancing quality of care – E-health may enhance the quality of health care, for example, by allowing comparisons between different providers. 3. Evidence based – all e-health interventions should be evidence-based; for example, proven by rigorous scientific evaluation. 4. Empowerment of consumers and patients – by access to the knowledge bases of medicine and personal electronic records via the Internet, e-health paves the way for patient-centred medicine and enables evidence-based patient choice. 5. Encouragement of new relationships between the patient and health professionals; for example, a true partnership where decisions are made in a shared manner. 6. Education of physicians through online sources (continuing medical education) and consumers (health education, tailored preventive information for consumers). 7. Enabling information exchange and communication in a standardized way between health care establishments. 8. Extending the scope of health care beyond its conventional boundaries. This is meant in both a geographical sense as well as in a conceptual sense. For example e-health enables consumers to easily obtain health services online from global providers. 9. Ethics – e-health involves new forms of patientphysician interaction and poses new challenges and threats to ethical issues such as online professional practice, privacy and equity issues. 10. Equity – to make health care more equitable is one of the promises of e-health. At the same time we have to be aware of a considerable threat where ehealth may deepen the gap between people, for example rich and poor. There has to be political measures which ensure equitable access for all. V. NKRS AS E-HEALTH Table I (see below) is the summary of the characterization of NKRs using the 10 Es in “e-health”. NKRs have four major strengths: Enhancing quality of care, Evidence based, Equity and Ethics. These Es summarize the purpose of the 81 NKRs and 24 registers candidates in Sweden. Extending the scope and Enabling information exchange are two strengths, although limited. Patients have to know where to look and how to find information, which is available within Sweden, but not globally. Efficiency, Empowerment of consumers and patients and Education of physicians and consumers through online sources
are potential strengths. Efficiency can be a major strength if it is accessible via the Internet. Empowerment of consumers and patients is in the early developmental stages. Education is possible for physicians, but not yet for citizens. Encouragement of new relationships between the patient and health professionals is one of NKRs’ weaknesses. There are very few evidences of that. Table 1: NKRs as e-health No
The 10 Es in ”e-health”
1
Efficiency
NKRs This can be one of the NKRs’ strengths, it is possible to: • Decrease pharmaceutical costs • Find new and efficient medical treatments • Utilize resources This is major NKRs strength because it: • Allows comparisons of care units on regional and national level. NKRs enable citizens to choose best care unit. • Allows comparison of best medical methods/treatment - Currently not accessible for citizens. • Allows comparison of best medical artefacts, e.g. prostheses, drugs Currently not accessible for citizens.
2
Enhancing quality of care
3
Evidence based
•
NKRs’ data is delivered via the patient journal systems. This is a major NKR strength.
4
Empowerment of consumers and patients
•
Not possible today, but via Internet access this can be one of the NKRs’ strengths.
5
Encouragement of new relationship between patient and health professional
•
Encouragement of new relationships between - not possible today, one weakness of NKRs.
6
Education of physicians and consumers
•
This is possible for physicians - by access to the results. Not possible for the patients.
7
Enabling information exchange
•
This is one of the NKRs’ strengths.
8
Extending the scope
•
This is possible within Sweden - not globaly.
9
Ethics
•
This is one of the NKRs’ strengths.
10
Equity
•
This is a major NKRs strengh.
VI. CONCLUSION AND FUTURE WORK The ten Es in “e-health” NKRs have: • Four major strengths • Two limited strengths • Three potential strengths • One weakness Thus, we can define NKRs as e-health. However the question remains whether it is meaningful to define one phenomena as e-health if it partially fulfils a list of Es? We invite other views and opinions on this question in the hope that we together can elucidate and delimit the realm of e-health. REFERENCES [1] [2] [3]
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Della Mea V. “What is e-health (2): the death of telemedicine?” J Med Internet Res 2001;3:E22. [5] Meyers J., Van Brunt D., Patrick K. and Greene, A. (2002). “Personalizing medicine on the Web” Health Forum Journal, 45(1), 2226. [6] Mitchell, J. “From telehealth to e-health: The unstoppable rise of ehealth”, Canberra, Australia: Australia: Commonwealth Department of Communications, Information Technology and the Arts (DOCITA); 1999. [7] Eysenbach, G. “What is e-Health?” Journal of Medical Internet Research, (3:2), 2001, p. E20. [8] Swedish Association of Local Authorities and Regions, http://www.skl.se. [9] Jelvall L. and Pehrsson T. “eHealth in Swedish County Councils 2012”, Inventory commissioned by the SLIT group. [10] European Commission, “eHealth Benchmarking III”, Deloitte & Ipsos Belgium, 13 April 2011.
