Most patients want to know as much as possible about their disease however they often feel unhappy with the information provided by their doctor. Patients frequently turn to other information sources but the medical language can be difficult to comprehend and very confusing.
To maximise patient understanding, French universities collaborated with the French League Against Cancer to build a patient oriented dictionary of terms. The idea was to create a resource that converted medical jargon into every day speech.
The researchers analysed hundreds of information resources used by patients to discover how patients wrote and talked about their cancer experience. They looked at health websites and followed breast cancer discussion forums. The terms were then analysed and the meanings defined. Similar words were then grouped together into one concept and then the concepts were structured into groups of words that had a relationship.
It was discovered that patients and doctors used very different words and expressions to talk about breast cancer. Patients used an incredible 3,000 different words and phrases to talk about their condition.
R. Messai who presented the findings said, "We really hope that doctors make use of this research and begin to use common words and phrases used by patients. By talking in a language patients understand doctors can make the breast cancer experience slightly easier."
It is hoped that the complete French dictionary will be available next year. The French team then hope to work with the UMLS (Unified Medical Language System) in the Unites States to create the first bilingual (French and English) patient friendly terminology for breast cancer.
Notes: The French Universities hope to work with the two major centres of excellence for terminology in the medical field: UMLS (Unified Medical Language System) and CHV (Consumer Health Vocabulary). UMLS is an initiative by the National Library of Medicine in the USA which aims at establishing links between medical classifications. Whilst the UMLS is oriented towards health professionals, the CHV is patient focussed. By analysing about 10 million health queries on the web the CHV have extracted 90,000 expressions which they are currently linking to UMLS concepts.
The French League against Cancer is a public service association and a federation of 102 departmental committees and 30,000 volunteers. Founded in 1918, the league leads the fight against cancer on three levels: research, information and prevention, and psycho-social assistance for patients. www.ligue-cancer.net
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ED6 Should advocates be involved in the design of clinical trials?
A breast cancer terminology for lay people
R. Messai1, M. Simonet2, M. Mousseau3
1Albert Bonniot, TIMC - IMAG laboratory. Faculty of Medecine. Unive, La tronche, Fra
2Albert Bonniot. University of Joseph Fourier, TIMC - IMAG laboratory.TIMC - IMAG
laboratory. Faculty of Medecine., La tronche, France
3Faculty of medecine., CHU of Grenoble. Oncology service, La tronche, France
Many studies show that patients want to get more information about their illness, and to participate in the decision relating to their treatment. Some studies indicate that from 79% to 96% cancer patients prefer to know as much as possible about their illness. Another study showed that only 19% of 232 patients were satisfied with the information they received from the physicians. The Internet is becoming an important resource for patients seeking health information. Despite the increasing availability of medical information, lay people often encounter barriers in health information seeking. Studies have identified some of the obstacles. The main obstacle being the differences in language used between patients and health professionals.
In order to improve information retrieval for breast cancer patients the TIMC laboratory and CHU of Grenoble collaborated with the French League against Cancer to build a patient oriented terminology. The latter relates every day expressions about breast cancer to technical terms or jargon used by health professionals. It will be used like an interpretative layer to help people understand the information retrieved and write accurate queries with the proper concepts and terms.
We used a corpus of texts to extract terms and expressions used by lay people to speak about breast cancer. This corpus collected from online health information web sites targeted to patients and web-based discussion forums on breast cancer n-Grams have then been automatically extracted from the corpus (a n-gram is a sequence of non consecutive words). We then analyzed the terms extracted to decide which should be kept in the terminology. Since the terminological properties of discourse on medical topics are not well characterized, this work has been done manually using a concordancer. A concordancer is a tool which makes it possible to view the occurrences of the terms in the texts and therefore specify the meanings. Expressions having the same meaning were grouped into one concept, and concepts were structured using different relationships.
We identified over 1,300 concepts expressed by over 3,000 terms. Patients use a language different from the one used by health professionals. Building such terminologies will help to bridge the gap between the two languages.
Last reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
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