2006-12-12
(Abbreviated Project Application)
Ulleval University Hospital, Kirkeveien 166, NO-0407 Oslo, Norway
Roger Bjugn, MD, PhD
1 BACKGROUND
There are approximately 4.6 million inhabitants in Norway. Health care is almost totally public.
Norway is dived into five Regional Health Authorities (RHAs) which operates (almost) all hospitals. The RHAs are funded through the annual national budget.
A national health data network (Norwegian Healthnet; www.nasjonalt-helsenett.no
) was established in
2003 in order to facilitate secure electronic interaction between various health providers. The
Healthnet is owned by the five RHAs and is mainly used for communication between hospitals, general practitioners and municipality care.
The Norwegian Centre for Informatics in Health and Social Care (KITH; www.kith.no
) contributes to the development of national standards for electronic messages, secure information exchange and electronic health records. KITH has also a national role related to coding systems and classifications. The national standardization program is funded by the Directorate for Health and
Social Affairs.
Health records have traditionally been paper based. In order to improve efficiency and routines - and ensure better patient treatment - electronic health records (EHR) have been evolving the last decades. EHR is a longitudinal collection of electronic health information for and about persons, where health information is defined as information pertaining to the health of an individual or health care provided to an individual. The information does not have to be handled by one unique, encompassing EHR-system. In addition to the EHR-system, several specialized (sub)systems are usually present in hospitals. Implementing EHR is a key element in the Norwegian national strategy for IT in the health and social service sector (1). In order to optimize the benefits of EHR, the information should be as structured as possible, preferably as predefined alternatives in a database format. This allows automatic search and extraction of information.
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Patients are free to choose hospital within the Norwegian public health care system. In order to enhance efficiency, all five Regional Health Authorities are at the same time encouraging the hospitals to become more specialized. Accordingly, there is a strong need for efficient and reliable methods for electronic transferal of patient health information between hospitals. National health registries are also trying to introduce electronic reporting (2).
In order to solve some of these challenges, one of the five regional health authorities tried to
“merge” the EHR-systems from all hospitals within the region into one regional EHR-system. This would give health workers form one hospital direct electronic access to patient records at another hospital within the same RHA when needed. However, in 2005 the Directorate for Health and
Social Affairs decided that this approach was not within current legislation (3). Only institutions with ongoing patient treatment (a hospital, but not an administrative body such as a regional health authority) can be defined as responsible for an EHR-system. In addition, every request for patient health information (within an institution and between institutions) demands active administrative action, which must be documented.
In another initiative funded by the Directorate for Health and Social Affairs and the five RHAs, the
Cancer Registry of Norway and the Norwegian Society of Pathology (4-5) started a project with two main goals:

Develop an XML-standard for electronic transferal of cancer reports between hospitals and the
Norwegian Cancer Registry using the Norwegian Healthnet .

Develop modules in database format for standardized reporting of cancer. The modules had to be integrated in the electronic specialist systems used by all pathology laboratories in Norway.
There are 19 public and two private pathology laboratories in Norway. They serve both hospitals and primary health care. In 2004 there were 926 000 samples (547 000 cytological and 380 000 histological samples (6).
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2 PROJECT: LAB-NOR
The main goal is to establish an electronic system for secure transferral of requests and replies regarding delivery of patient health information between pathology laboratories in connection with patient diagnostics and treatment. The solution must be in accordance with the rules set down by the
Directorate for Social and Health Affairs (3). Such a system will:
 Enhance efficiency.

Improve quality.

Improve security in the way personal health information is handled.

Enhance cooperation between various providers of health care.

Establish a model system which can be expanded both thematically and geographically.
The objectives for the project are outlined in Figure 1. A database, with key information on patient health information from all pathology laboratories in Norway, will be established. This database will receive, store and submit electronic information from the two data systems (DocuLive Patologi,
Siemens and Sympathy, TietoEnator) used by the laboratories.
Figure 1
Illustration of the various procedures to be established for the secure transferral of requests and replies regarding delivery of patient health information between pathology laboratories at different hospitals (H).
H 1
H 6
1 5
H 2
H 5
3
4
1: Request to database
2: Search within database
3: Request for information
4: Permission (or Refusal)
5: Notification of permission
6: Documentation of all events
Database
3 4
H 4
H 3
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The terms for the establishment of such a database are:

The database is as such not common for the hospitals, but only an operational tool for the transferral of patient health information between the hospitals.

The database will continuously be updated with key information from all pathology laboratories in Norway using the Norwegian Healthnet .

The database will document all relevant information regarding the request and access to patient health information.

All request – and replies – will be identifiable by name of both person and institution in question.

All solutions will be in accordance with current legislation and “best practice”recommendations.
The procedures to be established are:

1: Request to database (Fig. 1)
Request for patient health information (patients are identified by unique personal ID-numbers) will be sent to the database by modules integrated in the two pathology data systems used in
Norway. A request will only be allowed for ”active” samples (that is, samples registered for diagnostic work).

2: Search within database (Fig. 1)
The database cannot, within current legislation, respond to the request by providing information.
However, an automatic search for the presence of such information will be established. If such information is present, a request for access will be sent to the pathology laboratory/laboratories legally responsible for the patient health information.

3: Request for access to information (Fig. 1)
Such a request requires authentication (PKI; 7) of both person and institution requesting. The transfer of the request from database to the laboratory/laboratories in question will be handled by modules integrated in the pathology data systems.

4: Permission (or refusal) of access (Fig. 1)
The request will have to be manually handled (although integrated into the pathology system) at the laboratory/laboratories having relevant information. Information on permission (or refusal) of access will be sent back to the database by modules integrated in the pathology data systems.

5: Notification of permission (Fig. 1)
Notification of access to patient health information will be sent from the database to the institution requesting the information. The notification will be linked to the particular sample allowing a request (see above). Patient health information can be downloaded and linked to the sample in question.

6: All relevant data linked to the request will be stored in the database
Occasionally, one would like to order paraffin blocks or sections from other laboratories. Such a request scheme will be integrated into the solution to be established.
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There are 19 public and two private pathology laboratories in Norway. Eleven public and one private participate in the project, making it very representative.
The focus of the project is pathology. However, in the future the concept can be broadened allowing oncologists and surgeons to have access to such information using modules integrated into EHRsystems. The database can also be expanded to handle digital pictures and reference libraries.
The organization of the project is illustrated in Figure 2.
Figure 2
Organization of the project.
Ulleval University Hospital Personal Data Ombudsman
Heidi Thorstensen
Project Manager
Roger Bjugn (MD, PhD)
Sympathy (TietoEnator):
- K. H. Kjellevold (MD), Stavanger
- S. R. Pettersen, Stavanger
- I. L. Kvelstad (MD), Lillehammer
- M. Hanestadhaugen, Lillehammer
DoculivePatologi (Siemens):
- J. Godøy (MD), Lørenskog
- U. Westerhagen, Lørenskog
- I. M. B. Lothe (MD), Oslo (UUH)
- NN, Oslo (UUH)
User Group
Project Coordinator
Trine Brevig (MD)
Laboratorium for patologi,
Oslo
Aker universitetssykehus HF, Oslo
Ullevål universitets- sykehus HF, Oslo
Akershus universitetssykehus HF,
Lørenskog
Rikshospitalet -
Radiumhospital HF, Oslo
Sykehuset Telemark HF,
Skien
Sykehuset
Innlandet HF,
Lillehammer
Sykehuset Sørlandet HF,
Kristiansand
Sykehuset
Buskerud HF,
Drammen
Sykehuset i Vestfold HF,
Tønsberg
Helse Stavanger HF,
Stavanger
Participating Pathology Laboratories (Hospitals)
Norwegian Centre for Informatics in Health and Social Care
National health data network Ltd.
Companies
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2006-12-12

Financial support
The project has a budget of NOK 6.2 million (EUR 750 000), which is deemed necessary.

Resources available at UUH
UUH is a 1 200-bed public general hospital located in Oslo. The hospital has extensive expertise in establishing and running complex IT-systems.
The project has been approved by Corporate IT and is financially supported by the hospital. The hospital also has the legal expertise to administer the acquisitions (EU-tender) related to the project. Both the project manager and project coordinator are pathologists and have experience with running complex projects.

Resources available outside UUH – Norway
Twelve of the 21 pathology laboratories in Norway participate in the project. The Norwegian
Centre for Informatics in Health and Social Care, which is responsible for establishing national standards, is also participating. Alongside project staff, external consulting agencies will be hired for all relevant parts of the project in order to ensure good quality.

Resources available outside UUH – Denmark
A countrywide system for exchange of pathology reports between various institutions was set up in Denmark in 1999 ( www.patobank.dk
). Approximately 1 million reports are entered annually.
The project has close connection with the Danish staff and will benefit from their expertise.
3 Literature
1.
National strategy 2004 – 2007 for Norway. Te@mwork 2007 - Electronic Interaction in the Health and Social Sector . IS-1267E. Norwegian Ministry of Social Affairs and Norwegian Ministry of
Health. Oslo, 2004.
2. Elektronisk innrapportering av kliniske kreftmeldinger XML meldingsbeskrivelse for kreftmeldingene brystkreft, solide svulster og nonsolide svulster, versjon 1.0. KITH-rapport
14/05. Trondheim, Kompetansesenteret for IT i helsesektoren, 2005.
3. Ad adgang til pasientinformasjon i helseforetak og på tvers av helseforetak (Brev til Helse Vest
RHF). Ref. 03/608, arkivkode 503. Sosial- og helsedirektoratet: Oslo, 2005.
4. Sluttrapport: Prosjekt for elektronisk remisseoverføring og utvikling av database for rapportering av nøkkelparametre ved kreft. Den norske patologforening og Kreftregisteret: Oslo, 2004.
5. Veiledning til mapping av hovedfunn for kolon- og rektumkarsinomer, versjon 1.1. Trondheim:
Kompetansesenteret for IT i helsesektoren, 2004.
6. Årsrapport 2005. Oslo: Den norske patologforening, 2005.
7. Kravspesifikasjon for PKI i offentlig sektor, Versjon 1.02. Moderniseringsdepartementet: Oslo,
2005.
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