The communities at the Rare Commons portal are open to family members of pediatric patients with rare diseases (mothers, fathers, and guardians), as well as medical professionals and researchers. Each group linked to an illness is an environment for private interactive communication. In order to have access and participate a user name and password will be required; these will be delivered by email by the investigating team at Sant Joan de Déu Hospital that is in charge of the project.
Communities run by physicians
Regarding the communities run by physicians, these will only be accessible by doctors, and they will include a work space divided into four areas:
- Patients: with detailed medical questionnaires that each professional will be required to fill out concerning the patients participating in the research project.
- Community: this is a structured community with a forum for debate, so that questions may be posed and hypotheses advanced, engendering response on a participative basis by the other physicians in the community corresponding to the disease in question.
- Scientific chapters: a compilation of all the learning chapters provided to each participating family in the community corresponding to the disease in question.
- Bibliography: a complete listing of the scientific articles that have been published in the specific area of study.
Communities run by families
The communities run by families, each in respect to a particular rare disease, will offer the following services:
- Medical chapters: Structured information on the various effects of the disease on different body systems and organs.
- Medical questionnaires: once a specific medical chapter has been read, the questionnaire related to it will be presented to the user for completion.
- List of physicians treating the patient, who are also participants in the doctors’ community organized around the disease in question.
- Statistical information on the symptoms and effects of the disease. Once the family member of the patient has completed a questionnaire, he or she will have the chance to examine a summary of the information posted by the other members of the patient community, presented in an anonymous statistical format.
- Social environment: the community of patients is set up as a social network. It offers the user the chance to complete a personal social profile with additional information, and with interactive access to all the other members of the community. This access will not be limited by language; all the members of the community will be able to interact with each other. So as to eliminate possible language barriers, all posted messages will be translated by human translators, not by automatic translation mechanisms. This translation will be carried out in a maximum time frame of 48 hours.
Rules for participation:
- Each community will have a moderator, who will also be responsible for the translation of the messages posted by community members. Messages will be translated into and posted in Spanish and English.
- The authors of the messages are wholly responsible for their content.
- All the members of the Rare Commons platform must follow these working guidelines, in accordance with Spanish law in this area, and they must endeavor not to post illegal content (slander and insulting language), to respect the privacy of the other members and health care professionals, and to observe the laws governing the rights of authorship and property of images applicable in their country.
- Each new member of a particular community will be encouraged to inform others of their membership and help develop further participation by others.
- Given the particularities of each rare disease represented on Rare Commons and the possible manifestations in different patients, all information posted in the community is to be regarded as specific, and is not to be viewed as generalizable to all the other patients suffering the illness.
- No commercial advertising of any kind is allowed on the platform, nor is any particular treatment to be recommended, either by the patient family users or by the professionals.
- No photographs, videos, or other graphic material in which minors appear is to be posted without the permission of the minor’s parents or guardian.
- Once the collecting of medical data via the professional and family questionnaires has been completed, the investigating team will undertake its analysis. The information shared with the team of researchers shall remain anonymous at all times; at no time will any member of the team have access to the identity of the patient whose data are being analyzed.
All of the information provided by active members of the communities of families shall be considered of an informative nature, and not as medical counsel. Rare Commons is a platform designed for the collecting of biomedical data for research into rare diseases. It is not a substitute for medical treatment and advice.
The moderators of each of the communities will follow these working guidelines closely and will be empowered to eliminate from Rare Commons any messages deemed not to comply with them. Respect for others should be the operative principle at all times and in any posting.
All suggestions concerning how the investigative resources offered by this platform might be improved are welcome, both from the medical community members and from the family community members. Suggestions may be submitted at all times to the following email address: firstname.lastname@example.org.