Internet Services: Mailing Lists
Internet services are important for advocacy organizations in the twenty-first century. They are relatively inexpensive services but critical ones for keeping the membership in touch with one another. One example of this is the Genetic Alliance MemberForum. It is a terrific gathering of experts—and experts-to-be—in many aspects of advocacy providing each other with the richness of experience that one can only experience in such an environment.
A listserv is the simplest and perhaps most important way for your group to harness the power of electronic communications. Email lists permit your group to communicate instantly and cheaply with members all over the world, and allow your members to start and contribute to conversations on the many subjects that concern them.
Monitoring mailing list traffic gives you a sense of what is on the minds of members (although it is important to use other methods, since different people have different thresholds of comfort for different forms of communication). It also gives you a way to get time-value information to members immediately, without relying on surface mail or hoping members will visit a website.
Maintaining a mailing list requires diligence, however. Because the barrier to participation is so low, mailing lists can bring out the worst in some people—making them feel free to say whatever is on their minds, instantly, without the benefit of reflection. They can also be overtaken by conversation that is not on point—"noise" that drowns out the "signal." If you choose to maintain a mailing list, you must devise a plan for how to deal with these off topic or negative posts. One strategy is to crete a "Terms of Service"—a list of rules and expectations that, if violated, provide for consequences, such as removal from the list. Although time consuming, some groups choose to screen every message before it gets posted. Another organization chooses to handle negative posts by sending a personal email to the person to explain why their comments were wrong or hurtful. Then, the moderator writes to the group as a whole and explains to everyone that they are a large group and it is important to remember everyone's feelings and where they are at with their child's diagnosis when writing to the group. If a person continually sends inappropriate messages to the listserv, you may choose to moderate their messages or remove them from the list altogether.
Mailing lists can be as simple as a list of email addresses that an organization leader uses to broadcast information, but interactive lists, where all members can participate, and which may have automated command functions, must be "hosted." There are many options for doing this, including creating a group at Google or Yahoo! or the ISP you use for your website may offer mailing list support as a service as well. See the resources section for pointers to electronic hosts, and ask Genetic Alliance about hosting a mailing list if you are not yet ready to purchase a hosting plan for a larger electronic presence.
An Example: PXE General Discussion Guidelines
- PXE International
"Purpose of the PXE General Discussion Group
Who can participate?
The PXE International list (email@example.com ) is open to anyone who is interested in pseudoxanthoma elasticum. This can be individuals with PXE, their families, friends, doctors, or anyone else who is interested.
Scope of Discussion
Topics related to PXE, including questions about the care or characteristics of PXE, personal updates, thanks, and social news are all acceptable. Answering questions on any aspects of PXE is the primary reason this group exists. Medical questions are welcome on our companion list, PXE Information.
Additional topics of discussion may include finding others in your local area with PXE to arrange personal meetings, or enlisting the help of the group to send support to a specific member who is in need.
PXE International also reserves the right to make periodic announcements or updates of events or programs we sponsor. These postings may include requests for ideas on improving the events, or to aid in determining interest in a specific idea.
Aside from these periodic announcements, PXE International assumes no responsibility for the content or use of this discussion group, or the accuracy of the information provided here. Please double check any information you receive, and keep in mind that what you hear in this group is not a substitute for medical or legal advice. If you have a medical question, you should see a doctor, and if you have a legal question you should consult a lawyer.
Please do not post questions about the operation of the Discussion Group or send messages asking how to unsubscribe from the list. These types of questions are to be sent directly to the list administrator (firstname.lastname@example.org).
Any topic not related to PXE is not within the scope of this discussion group and should not be posted. This includes virus alerts, chain letters, etc.
Discussion Group Netiquette
Frequently Asked Questions
A list of Frequently Asked Questions for PXE can be found on the PXE International website at: PXE FAQ
Please check the website for the answer to your question before posting to the group.
"Lurking" is a term used to describe people who join a mailing list, and then never post a message. Despite the somewhat negative connotation, 'lurking' is actually very acceptable and even encouraged on mailing lists. No pressure should ever be put on members of the Discussion Group to "speak up" or "make themselves known".
Useful Subject Lines
Before responding to a post, please check the subject line for accuracy. If you belong to the digest version of the list, you should change the subject line before replying to ANY message.
Meaningful subject lines help the rest of the group follow the threads easily.
Identify Yourself Properly
Any email sent to the group should be signed and should include as a minimum, the name of the person typing the message and their relationship to a person with PXE. It might also be helpful to indicate the age of the person with PXE, or the state you are in, or other relevant information, especially if you are asking questions.
Replying to Messages
If you're replying to a previous posting, include something to remind the rest of us what the original posting was. You don't need to include the entire original post (especially lengthy ones), but include enough so that your posting makes sense.
Avoid messages that simply say "me too" but add nothing to the discussion. Showing support is important, but if you feel the need to reply, it would be best (and probably more supportive) to say more than just two words. You might also consider a direct reply to the sender, rather than to the entire list.
Make Yourself Look Good
You should double check your spelling and grammar before posting messages. Without body language and inflections, sometimes postings can take on an unintended tone. Do not type in all capital letters—this is considered shouting and is rude. Keep in mind the only impression people will have of you is through your typed message, so make sure it reflects you properly. Do your best to use complete sentences and proper punctuation. The reader should not have to decipher your message.
You should never say anything on this Discussion Group you would not say if we were all sitting next to each other in one large room together. You should never say anything that is not supportive or helpful to the group. While opinions may vary on some issues, respect should be universal.
Because some of us have multiple medical issues or interests in various areas, many people are subscribed to a number of Discussion Groups. This can lead to trying to read dozens of postings everyday. You should be considerate of others' time when posting a message.
People access the Internet a number of different ways and read email with a number of different programs. Please keep this in mind. It can take a considerable amount of time for some people to receive even one message. Try to make that time worthwhile.
If your posting is directed at or replying to an individual (or two), it is likely better if you send it directly to them.
Also, special fonts or other effects, such as bold or italic type, should not be used. Many readers will not have the capability to view these types of messages and they will either appear blank or as an unreadable mess. Postings should be in plain text only. Any signature information posted at the end of the message should be limited to four lines.
Flaming (cruel private attacks on any one person, or group of people, criticizing their opinions, views, character, or any other personal aspect) is prohibited. Personal disagreements should be handled privately, not through this list.
Email attachments (such as files or photos) should not be sent through the list. If there is something you'd like to share, ask the readers to email you privately.
No outside groups or organizations are allowed to post to this Discussion Group.
If you can't back up your comments with facts, it is best not to speculate. Misinformation spreads quickly. Many newcomers to the group are hungry for information, and can be very impressionable to the comments of apparent "veterans". While we all want to be as helpful as possible, no one will benefit from incorrect information being spread around the Discussion Group. Vague or unsubstantiated posts are discouraged. It's better to admit ignorance than to fake genius.
Anonymity of List Members
PXE International members remain anonymous unless they choose to post a message. When posting a message, your return email will be revealed to the group. No list of subscribers' names or other information is available to any one for any reason. Subscribing to the list for the purpose of compiling a mailing list or furthering commercial or personal interests is prohibited."
In addition to listservs, some advocacy organizations have begun using social networking sites such as MySpace.com as a way for their members to keep in touch. Through MySpace’s “group” function, organizations can share photos and their own online discussion forum. MySpace membership is free, and if you leave your group as public, new individuals will be able to join. For more information, visit the Social Networking page.
Improving your current listserv
After you have developed a community listserv, you may be wondering about better ways of moderating your forum in regards to incorrect or inappropriate information posted or resolving a conflict among members. Here are some examples of how some organizations are currently moderating their listervs:
- I have run an online information/support group (listserv) for over 15 years and it has grown to over 1,000 people. I am a patient and have a counseling degree which helps immensely when there are conflicts. The last couple of years I have added a co-moderator who is also a patient and an oncology social worker. Our group is open discussion and we don’t interfere with the conversation unless the information is inaccurate. We do post about research, drug shortages and educational opportunities. We have put a couple of members “on review” to have their emails approved before being posted because they tend to “play doctor” and “tell” people what to do. We encourage people to share their own experiences only to let them know what others are doing. This gives them information that they can discuss with their doctors to see if a different treatment would be appropriate for them. We do not allow any selling of products. We also try to keep them on topic with disease specific conversations to keep down the clutter. There are plenty of other groups that discus diets/alternative treatments/religion/etc.
- I have seen many other support groups for our disease on the internet and the biggest problem is that they are moderated by someone who is not familiar with our specific disease…one type of cancer is not like another! Over the years, we have had physicians and pharmaceutical reps join to learn more about the patient perspective (they do not participate). The member names are confidential unless they post. Maintaining a listserv is time-consuming and a responsibility not to be taken lightly. I have been able to recognize when someone is having an adverse reaction to treatment and get them to contact their doctor as well as deal with someone who was suicidal. This is one reason it helps to have someone who has some background moderating.
- We have hosted a Listserv for 10 years now. Some of our members were finding religious posts to be "preachy" we started a list of guidelines about posts such as avoiding posts with content that would insight hurtful debate on political and religious beliefs. We also asked parents to avoid making posts that could be misconstrued as medical advice. We saw a dramatic decline in our posts after we instituted these guidelines. I think one mother stated it best "When I need advice I go to someone I have a relationship with. I go to someone I know. Relationships are built by knowing something about people. That isn't simply built upon sharing the bad times but more importantly about fellowship about the good times. When our son reached a milestone we never thought he would reach. Now I am not sure if that is appropriate to share or not. I often times measure whether it is appropriate to share something on the Listserv. In the end I don't make a post at all". So we dropped the guidelines and find tolerance is a better approach. The number of posts dramatically increased after we dropped the guidelines and have been doing well ever since. Bottom line if someone doesn't like a post they can always delete it.
Handling Spam on Forums and Listservs
Just like junk mail can find its way into your inbox, you might find unwanted messages on your group's message board or listserv. Check out Protecting Message Boards from Spam for lots of ideas on how to control and prevent spam.
- Support for Individuals and Families
- Youth to Adult Transition Issues
- Conferences, Workshops, and Meetings for Affected Individuals
- Connecting Individuals
- Internet Services
- Phone Services
- Protecting Member Privacy
- Dealing with Death
- Autopsies and Tissue Collection