Mod 101: What are our values?

A year of review of our community best practices has given us a better understanding of our values and mission. The Mod Support team is developing information that will help all of us to moderate responsibly and well. Please take a moment to read over our Values, which are a good litmus test to use when you are trying to decide how to handle issues on the community. Feedback is welcome.

Ben’s Friends Community Values

A Ben’s Friends community is a place for peer-to-peer support, information, and sharing of experiences. We owe it to our members to provide a safe, supportive place where they can engage in conversations about their experiences living with chronic illness.

One of our values is Inclusiveness. Anyone who has an earnest desire to help those living with a certain condition is welcome to join a community and participate there, as long as that person abides by our guidelines.

Listening is a value on our communities. How does a member know they have been listened to? When we acknowledge that the member has spoken. “No post unnoticed” should be our goal.

Friendliness and compassion are values. Connecting with people on a personal level. Taking an interest in their lives and pursuits, encouraging them for small triumphs and supporting them through setbacks. Not through a lengthy private correspondence, which can sap community strength, but on the public areas of the forum.

Among the goals of the communities is empowering members to be better advocates for their own care. We might call this Preparedness or Empowerment. Offering patient guides, with a focus on increasing members’ understanding of their conditions and helping them formulate questions for their doctors’ appointments, is a big part of helping members be prepared. Ensuring that their questions are answered is also a part of this value. On a well-functioning community, the knowledge level of the entire community goes up.

Positivity is a value on our communities. This means that though a certain amount of venting is okay and expected, moderators will endeavor to help members get past the venting stage to a more positive outlook, by helping them not so much to focus on problems but to focus on solutions. Sometimes this is as simple as reminding a member to contact the appropriate member of their healthcare team, or to seek an additional opinion. Sometimes it is encouraging members to remember things that make them feel good or things that they are grateful for. There are a number of ways to highlight positivity on the communities: through featuring, broadcasting, responding, posting articles, liking positive posts, and modeling positivity ourselves.

Privacy is also a value. We do not sell or share member information. We keep identities and private messages private (though message to moderators may be shared as needed with other members of the mod team).

Some Reminders:

Information of a medical nature must be carefully screened and must be focused on established practices rather than unproven treatments. Unproven treatments should be found in the Complementary subgroup or discussion category only, not in the Main Forum. Treatments based on hearsay or commercially oriented websites should not be presented. Our member populations are vulnerable and sometimes highly suggestible. They will try things offered by other members, even if those members have no actual experience with the remedy in question. Likewise, members and moderators should not “prescribe” a certain course of treatment for other members. “Describe (share experiences), not prescribe” should be our mantra.

The mission of providing information and support can be jeopardized when other agendas come into play. Religious testimony, witnessing, or preaching are outside our mission, as are political causes. Bashing doctors, or hospitals, or big pharma is not part of providing information and support. Neither is promoting or advertising particular products and services. This applies to anyone in the organization from founders to members.

It is also important that we recognize our limits as an online community. We cannot support anyone financially. We cannot counsel those who are suicidal or in crisis. We cannot counsel those with psychosis, alcohol or drug addiction, or those recovering from trauma or sexual abuse. All we can do is point them to the relevant professionals, and remind them of our limits as an online support community.

On a Ben’s Friends community, the members should be center stage, with the moderators in the wings. Message broadcasting or sharing discussions is a great way to get members involved helping each other, which leads to a stronger, more sustainable community than the mod team running the show. Moderators should remember that “it is not about me” and should think about how to ensure that their departure will be a seamless transition for the community.