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SPM Community Guidelines

The online community of the Society for Participatory Medicine (SPM) is the place where SPM members — such as patients, advocates, healthcare professionals and policy makers — can keep the conversation about participatory medicine going all year long. We’ve developed these guidelines to help keep our community a safe and productive place for all members to share their thoughts, experiences, and insights.

We are meant to be a kind, thoughtful, safe, and supportive online community. Please keep that in mind whenever you read or reply to something in the community.

  1. All members’ viewpoints are valid, so please be respectful, kind, and thoughtful. We’re a diverse community offering a wide range of perspectives. Please respect others’ lived experiences when replying and remember it’s okay to disagree, but so without devaluing another person’s experiences, knowledge, or opinion. Always give the benefit of the doubt to another person and try to avoid making assumptions about their experiences.
  2. Take what you want from the community. Some people find value in just reading other people’s experiences, while others prefer to actively participate by offering their own opinions and experiences. Share at a level that is most comfortable for you.
  3. Try not to assume other people’s knowledge or experiences. Because of the diversity of our community, it’s best not to assume people have had the same knowledge or experiences you’ve had. Other members may also not know the abbreviations you know (especially since the medical community is rife with them). Try to avoid jargon and if you need to use it, please explain or link to explanations when using jargon or medical abbreviations.
  4. Avoid accidentally hijacking a conversation. Sometimes conversations take a turn and go off on a tangent. While that works fine for in-person discussions, it is more challenging to keep track in an online community. Start a new topic thread if you’d like to change the topic.
  5. Avoid personal attacks. Please do not engage in personal attacks or threats against other members in our community. If you have a personal disagreement with another member, please try and work it out privately. If you need further assistance, please contact a moderator (via email at with a link to the post or reply of concern).
  6. Be descriptive and detailed. If you’re posting looking for advice or assistance about a specific healthcare or medical problem, please be as detailed and descriptive as possible. Remember, most people won’t know as much as you do about your own health journey, so the more information you provide, the better. Please use a descriptive subject line, too.
  7. Avoid inappropriate content. Inappropriate content includes, but is not limited to: direct solicitation of other members; threatening or profane messages; copyrighted materials; personal attacks or messages meant to intimidate or harass; private communications with others who haven’t given their permission to share publicly; messages not relevant to participatory medicine or the work of the Society; or anything that violates the Society’s Terms of Service.
  8. Consider other SPM resources. Sometimes members write something in a forum post that is full of resources and information that would be invaluable to a wider audience. If you find yourself writing such a post or message, consider submitting it to the SPM e-patients blog instead or in addition to posting on the forums.
  9. Administrative and technical issues are handled privately. All administrative and technical issues in the forums are handled privately, one-on-one with the member. We do this so as to not clutter up the forums with off-topic conversations that don’t have to do with participatory medicine.

What happens if I violate a Community Guideline?

Community guideline violations may be brought to a moderator’s attention, or a moderator may proactively discover a violation on their own. Email: in order to report a problem. Include the subject line of the thread in question or, preferably, a link to the conversation on the forums that you’re writing about.

Once a violation is reported or found, the moderator will determine the legitimacy of the report and take action appropriate to the violation. For instance, if a post is clearly in violation of the community guidelines (e.g., harassment of another member; personal attack), the post may be edited or removed, and the member contacted privately about the community guideline that was violated.

The community guidelines are meant as a general framework to help create a community of diverse voices that are heard equally — not to punish a member. When a violation is found, the only goal is for a member to understand how and when they violated a guideline in order to bring their conduct and future posting in line with the community guidelines.


15-Feb-2021 revision