SMIL – Scandinavian Medical Information for Laypersons

SMIL includes the websites of consumer associations, regardless of quality

January this year marked the opening of the Internet gateway SMIL, containing a carefully monitored selection of websites dealing with illnesses and their treatment. All these sites are in one or other of the Scandinavian languages: Norwegian, Swedish or Danish. SMIL’s target group consists of patients, their relatives and all interested members of the general public. It also represents a useful tool for librarians and for others engaged in distributing information to these groups.

Background to the project
Considerable efforts are being made, not only in the Nordic countries but also internationally, to strengthen the position of the patient within the health services. Much of this work consists of finding new ways to increase patients’ knowledge of health and disease. New technology has simplified access to information, making it generally available in ways not possible before. The Internet is a fast and effective channel for the distribution of information on health and disease. Nowadays the websites of patient organisations, consumer associations, government bodies, hospitals and other institutions offer the public a wide range of information, as do also many commercial enterprises and private persons, although the quality of information may vary considerably. The Englishspeaking world has come a long way in utilising the Internet for these purposes and information in English can be useful in many situations. Our experience, however, shows that in the Nordic countries most people prefer the information to be available in their own or in one of the other Scandinavian languages.

What is SMIL meant to be – and for whom?
The primary aim of the work with SMIL has been to collate the patient information available on the Internet, quality being the starting point. The advantage is that we avoid duplication of work, while at the same time making the information easily accessible. A multilingual system of subject headings makes possible the retrieval of information in all the Scandinavian languages, the idea being that if the original search language offers no information on the subject concerned, it may well be available in one of the other languages.

SMIL’s target group consists first and foremost of patients, their families and any interested members of the general public. It goes without saying, however, that health personnel, librarians and others working in the field of information constitute another important target group.

History and co-operation
The project was initiated by Eva Alopaeus, who at that time sat on the board of the Swedish Library Association’s Committee for Medical and Health Information Libraries, and Elisabeth Husem, head of the Norwegian Library Association’s Special Committee for Medicine and Health Sciences. In the summer of the year 2000 Eva Alopaeus formulated a project plan and sought financial support from a number of organisations. The Swedish Library Association made an initial contribution of SEK 50,000 and in the summer of 2001 a project group was established consisting of librarians and nurses from Sweden and Norway. A further contribution of EUR 3,280 was later received from NORDINFO. In 2002 the group was joined by a representative from Finland.

During the first year the project group held two meetings to discuss quality criteria, content and the technical standards required. The task of collecting information and assessing quality was soon under way but it took some time before a satisfactory technical solution was found. The programme finally chosen was produced by Lincom A/S and has proved to be both flexible and user-friendly. Registration in itself is a simple process.What really takes time is the evaluation and indexing of the websites to be registered.

The funds granted to the project have allowed SMIL participants to meet once or twice each year for discussion, training and not least in order to establish new personal contacts. Co-operation otherwise has mainly been conducted by e-mail and to a lesser extent the telephone. The project has two co-ordinators; one for Norway and one for Sweden/ Finland. They are not involved in the SMIL registration process, being solely responsible for administration and work co-ordination. The other project participants in each country have divided between themselves responsibility for the various categories of illness. A summary of these divisions of responsibility has been posted on a website, making it easy to see who should be contacted in order to discuss any specific subject. Lines of co-operation have thus been established not only within each individual country but also across borders. In order to ensure the most uniform use of headings possible, one member of staff has responsibility for indexing and all new registrations must be approved by this person before they can be made available to the public.

Interdisciplinary co-operation has been a source of strength for the project. The three participating nurses (Swedish), who all work directly with patient information, have provided the project with valuable experience, particularly with regard to quality assessment and criteria. Librarian expertise has played its part in building up a uniform and consistent database.

What does SMIL contain?
Very early in the project it was decided that the gateway should contain information about illnesses and their treatment, functional handicaps, medical examinations and patient rights. Documents dealing with preventive medicine and health information of a more general nature may be included, but the focus is on illness and disease. The gateway also contains links to the websites of consumer organisations and patient associations.

An important principle of SMIL is that the user should be offered immediate access to the relevant information.We therefore register web documents to a greater degree than websites. Approximately 85% of the links in SMIL go directly to documents, and the remaining 15% to gateways for health-related subjects, periodicals, consumer organisations and institutions.

Of the 3,000 or more registrations in SMIL at the present time about 2,000 are from Norway, some 1,000 from Sweden, about 150 from Finland (presented in Swedish) and just a few from Denmark. The reason for the small number of Danish registrations is that so far Denmark has not found it possible to participate in the project.

The suppliers of information to SMIL consist of idealistic and humanitarian associations and organisations, public bodies and commercial companies in the health sector. Information from non-profit organisations is to be preferred but in many areas the commercial gateways provide a useful supplement.

Quality before quantity
SMIL does not aim to gather together all possible information on the Internet concerning illness. On the contrary, our objective is to select the best websites dealing with each specific subject. There is no upper limit to the number of registrations under any particular heading, but there will be constant evaluation as to whether or not a new registration supplements already existing information. It is desirable to have several registrations under each heading in order to give the user a basis for comparison. If, however, too many websites contain the same information, the removal of some will have to be considered.

Quality assessment
SMIL staff evaluate the quality of websites solely in relation to ‘external’ criteria.

We do not judge the professional content. Many organisations have established reliable criteria for this type of quality assessment of health-related information on the Internet and the project group therefore decided at an early stage that there was no need to ‘re-invent the wheel’. A comparison of several sets of quality criteria also revealed considerable similarity with regard to which factors are evaluated. In SMIL we have chosen to take EU’s quality criteria in this area as the basis for our assessment. This does not mean that the websites registered in SMIL necessarily meet these criteria, merely that the latter provide a starting point for our evaluation.Whether or not a website is taken into SMIL depends upon a total appraisement, involving a check on the existence of other information on the subject in question. Quality criteria include an assessment of the website’s openness with regard to producers, financing and target group, also the names and qualifications of suppliers, updating procedures and accessibility. SMIL includes the websites of consumer associations, regardless of quality.

Search and retrieval
The search interface exists in all three languages and it is possible to switch from one language to another at all levels.

The aim of retrieval is to be simple, while at the same time providing as much relevant information as possible. In SMIL searching in free text offers a general broad retrieval, while a subject heading system meets the need to sort out the websites which are most relevant. The subject heading system consists of parallel words in all the three Scandinavian languages, thereby making it possible to find websites in all three languages regardless of which language is used in the initial search. The gateway’s front page contains a row of letters from which one can click into the subject headings.When searching in free text, the subject headings will also be retrieved and displayed in a separate window above the list of hits made.

As an illustration, anybody seeking information on leukaemia will find this as a separate subject but could also search via the main headings ‘Diseases of the blood’ and ‘Cancer’. Those who initially search far too generally will therefore still be able to find their way. In addition there is a reference aid, so that a search for ‘Cancer of the blood’ will give the same result. Several search words, such as ‘leukaemia’ and ‘children’, can be combined, thus ensuring the greatest possible accuracy in the search.

The way ahead
SMIL was officially opened in ö with a presentation at the Norwegian National Hospital in Oslo and is now generally available for use. Nevertheless, SMIL is not a finished product. There are doubtless subjects still lacking and the information already registered must be continually evaluated. The majority of those who worked on the project will continue with SMIL as one of their current tasks. The Library for Medicine and Health Sciences at the University of Oslo Library is the host for the project and will meet the expenses incurred.

Our hopes for the future include welcoming our Danish colleagues as participants in SMIL. So far they have been unable to see their way to join us but without the Danes Scandinavian cooperation is incomplete.

Translated by Eric Deverill

chief librarian Library for Medicine and Health Sciences, University of Oslo Library