Multilingual Platform for rare diseases
The broad adoption of Web 2.0 technologies in the e-health domain has led to the emergence of the term "Medicine 2.0" for relevant applications, services and tools. Web 2.0 applications have contributed towards bringing geographically dispersed groups of people with common interests together. Nevertheless, language remains an essential barrier. People with a wealth of knowledge to share, and willingness to participate, cannot become members of an online community unless they master the official language of the community and of the software platform that supports it. This is a great impediment to the effective dissemination of valuable knowledge among dispersed medical communities, particularly those interested in topics where information is very scarce, such as rare diseases.
The MORMED project attempts to address this challenge by developing a multilingual social networking and content management platform. The platform will combine the semantically enhanced social networking and content management OrganiK platform with technologies enabling machine translation and post-editing by human experts to make content available in multiple languages. MORMED will be piloted in a community interested in Lupus or Antiphospholipid Syndrome, involving researchers, medical doctors, general practitioners, patients and support groups.
Funded by: CIP ICT Policy Support Programme
The World Wide Web is used nowadays as the main and preferred repository where people can search, access and publish information on any topic. General information addressed to a wide audience is rather easy to identify, evaluate and access. However, despite the availability of information in general, there exists a barrier as far as the language is concerned. This problem is further exacerbated by the fact that information for specific communities, such as communities of rare diseases, is not easily available and not always easy to find. An example is the community interested in lupus or antiphospholipid syndrome (Hughes syndrome).
Such diseases are not widespread, although they appear all over the world, and information resources are dispersed and difficult to find. Therefore, people from diverse cultures and backgrounds could benefit from an aggregated presentation of interesting content. Such a pool of people is not restricted to patients but also general practitioners (GPs) and experts will benefit from information about clinical trials, research theories or results, patients' treatment experiences, etc. Information exists but is available only to specific groups of people or to specific countries. Language barriers further impede the dissemination of information and the exchange of experiences between the involved parties. An additional barrier is understanding scientific terminology, especially in another language. Consequently, communication channels between the interested parties, e.g. researchers and general practitioners, GPs and patients, are cumbersome or even non-existent.
Rare diseases such as lupus might be treated much better if experiences and information were accessible internationally and instantaneously. Moreover, scientific research could be further promoted if experiences and information were accessible and in a way that could nurture collaboration and knowledge commonality. Bearing this in mind, the need becomes evident for a way to support contribution of content and its effective dissemination and retrieval, as well as to promote informal social networks which exchange ideas and experiences, without the difficulties of language barriers.
Description of target users and groups
MORMED intends to meet the needs of the community of individuals interested in lupus or antiphospholipid syndrome (Hughes syndrome) by creating an efficient way of sharing knowledge.
The community of individuals focusing on lupus and Hughes syndrome involves:
- Researchers and scientists;
- Medical doctors, general practitioners (GPs), medical consultants and other experts requiring information on rare diseases (lupus and Hughes syndrome);
- Patients - possibly represented by patient support groups, family and/or friends.
These individuals require information exchange at an international level. The proposed solution enables communication between them in an interactive and language-neutral way. Researchers and scientists could communicate their research advancements or post recruitment information for clinical trials. GPs could access valuable information on latest trends to assist them while dealing with and supporting patients. Moreover, GPs could provide case studies to researchers. Finally, patients and their family and friends could share their experiences and concerns and exchange ideas on best practises to fight these diseases.
MORMED offers ways to promote sociality and knowledge commonality among the people focusing on these rare diseases, regardless of the language in which they choose to express themselves or their background. So, individuals with restricted foreign language competencies are not excluded, rather they are accommodated to participate and contribute.
The MORMED platform would result from integrating two main components. The first is OrganiK, a Web 2.0 semantically enhanced Knowledge Management Platform, which will provide the presentation, business logic and storage layers for the MORMED platform. The second component is LTC Communicator, a web-based multilingual eCommunication tool, product of LTC Ltd, further extended with text summarisation capabilities, which will provide the translation and text summarisation services necessary.
The MORMED platform aims to promote the creation of online communities and groups with similar interests, where people can share information in an informal way. These groups can be administered and moderated by one or more individuals. The group participants will have permissions and rights assigned by administrators. Visibility of content and data privacy issues can also be managed in a group- or individual-based manner, reassuring that no information is exposed to unauthorized access.
The users of MORMED will be able to post their experiences, concerns, research results or news items in a straightforward way, thus triggering discussions and comments, and promoting sociality. User friendly tools will support the authoring of content.
It will be possible to annotate all published content with descriptive tags. Suitable tags will be suggested by analysing the content in a semantically-enhanced way. These tags will contribute to building a community-enriched taxonomy of terms descriptive of the specific domain. Thus, users will benefit from targeted search results, grouped views of the published content and many more features.
The MORMED platform will employ mechanisms that will not only allow users to retrieve the desired information, but also have information relevant to their interests "pushed" automatically (notification, RSS feeds). Moreover, user profiles will be analysed (favourite content, tags used, etc.) and conclusions will be drawn in order to enhance the quality of recommendations.
To overcome the language barrier, MORMED will offer content in multiple languages. Efficient translation tools offering pro-active or on-demand translation of the content will be integrated into the platform. In cases where high quality translations are required, human experts will be engaged in the translation process. Platform users will be able to rate the quality of translations and thus trigger the post-edition of content items with low ratings.
Main results, benefits and impacts
The main goal of the MORMED project is to establish and offer a multilingual thematic community platform for rare diseases as a service to groups of interested users. This service will be offered by LTC, as the main service provider and translation services facilitator, even after the end of the project's funding period.
The main objectives of MORMED are to:
- integrate and deploy a multilingual thematic community platform for rare diseases which will promote information exchange and social networking;
- make existing content accessible via this platform and stimulate new, user generated content;
- use existing linguistic resources to improve the automated translation quality;
- test and assess the platform by evaluating the experiences of users involved in the rare diseases domain, using four languages (English, Spanish, German and Hungarian).
- A multilingual thematic community platform (piloted in rare diseases).
- Relevant linguistic resources (e.g. corpora, taxonomies, translation workflows, etc)
- Content (e.g. blog posts, wiki articles, bookmarks, etc)
- Dissemination activities (workshops, presentations, articles, etc)
Return on investmentReturn on investment: Not applicable / Not available
This field will be completed by the submitter when the lessons learnt have been identified and understood.Scope: International