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Creating patient communities with a little help from the Internet

You do not have to be highly technical to create an on-line patient community today!


It has been over two years since Eurordis decided to launch its first mailing list on the Internet. Since then, almost 20 lists have been created and …. patients and their families are communicating and supporting each other without having to meet physically. Although much remains to be done and there is room for improvement, mailing lists are forging increasingly solid on-line communities that will hopefully endure the test of time.


Are you "computer illiterate" wondering what is a mailing list and how it could be useful to you? Or on the contrary, are you an experienced Internet user that can easily find the information you are looking for on the Web wondering why you should join a mailing list? Regardless of your "Web proficiency" if you are a rare disease patient or a family member of a rare disease patient, you will be interested in this relatively new way of communicating and finding information. Why? Because mailing lists are of specific interest to its users and can potentially generate information that is not currently available from doctors or other more traditional sources. Moreover, because it can put you in touch with other people experiencing similar problems who can understand and therefore provide the best support and specially-tailored advise for your particular case.

Mailing lists are defined as an information tool and have been around since the 90s but it is only now that they have become a well-recognised tool of information exchange. Furthermore, with the proliferation of new tools on the Web such as wikis and blogs, they are now revealing their true potential as sources of information and social support from patients and carers to patients and carers.

Since the launching of the first Prader-Willi mailing list, a total of 17 mailing lists have been created by Eurordis, hosted by Medicalistes and "owned" or facilitated by members of Eurordis who have requested the organization to open a new list for discussion. The procedure is very simple and usually patients, or their relatives, subscribe to the list that deals with their particular disease. Sometimes, health professionals are also accepted on the discussion lists and can ask or respond to specific questions. "The idea is not to replace medical advise but to complement it with mostly patient-based knowledge and experience about the particular condition they live with," explains Yann Le Cam, Chief Executive of Eurordis. " Our vision, is ultimately to reach patients who have the rarest diseases and are isolated because of lack of communication with fellow rare diseases patients. The Internet is the best way to bring them together, even if they are few and far away, in order to break their isolation."

The first phase of Eurordis mailing list project, which was funded by the LEEM, came to an end in December of last year and fulfilled most of its objectives. Namely, to create a technical platform that would enable the users to launch or contribute to a mailing list, to provide people who would moderate and facilitate the discussions, and to draft the first version of a Charter of good practice, which is currently available in French only.

"We were convinced that mailing lists were the right tool to consolidate our patient communities right from the start. Since they were first introduced to the Eurordis rare diseases patient community, many people are using them and getting valuable information from them," says David Oziel, IT Consultant from Medicalistes. "Nevertheless, there is still room for improvement, some mailing lists are very active but on other there is almost traffic, namely because of lack of time on the part of the moderators, some apprehensions about the confidentiality of the information, language barriers and above else lack of promotion."

The follow up of this project, promises address these problems and to put into practice the lessons learnt from the past two years, as well as to increase the number of lists and subscribers. The idea is to expand the offer available by integrating collaborative tools such as blogs and wikis and to improve accessibility by offering the service in at least 5 languages and integrating special features for users with disabilities. "With the integration of these new, more participative tools, we have reason to believe that mailing lists can take off and help create the patient communities of tomorrow," argues Yann Le Cam, Chief Executive Officer at Eurordis.

An anecdote from a list-owner gives us a good reason to believe. "Although only 20 messages were posted on the Ichthyosis mailing list last year," says Flavio Minelli founder of the Ichthyosis mailing list and Board Member of Eurordis. "The mailing list has become and easy-access meeting place for people affected by the disease and it has rapidly become the unofficial European patient network for Ichthyosis in Europe".

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