Non-Profit Looking for Social Media Answers

questionLast night I gave a presentation to the Chicago Chapter of the Scleroderma Foundation about the basics of Social Media and implications to a non-profit.  You can download and use the presentation here. Scleroderma or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases.

They had 3 great questions that I would love to solicit your feedback

  1. How could we use Social Media around goals as well as discussions?

  2. How does Social Media involvement at the national level differ from the local level?

  3. Should we lock down certain areas of discussion to specific people or keep it open and transparent?

We look forward to your responses!

  • Sevick
    1. Social Media is a great way to promote events, fundraisers, share new information, and maybe most importantly connect people who, apart from a medical condition my not have anything else in common. I think the goal is to engage people with the hope this will organically lead to bigger and better things.

    2. At the national level social media may be more focused on helping provide the framework for successful local chapter social media plan, or as a great way to solicit feedback from the local level on issues that need national attention.

    3. Medical issues are particularly sensitive topics for most people, or at least in certain forums. In most areas of the business for Nielsen online most of the content we look at comes from message boards, followed by blogs, and finally usenet groups (yes people still use them). This holds true across nearly every product vertical we study (at Nielsen Online) except health care, where the usenet group’s rival and sometimes outweigh discussion boards in terms of message volume. I would recommend some sort of personal security being involved in any social media discussion that may delve into a specific individuals medical condition.
  • AP
    1 - I don't understand what you mean by goals? Within the discussions, if there were a certain section for "goal-based" discussions like fund-raising, then you could open those up to the community to not only help in meeting the goals, but also to get tips/tricks to help others.

    2 - The national level has access to education, resources, information, and content that the local level might not have. The local level can help organize the real world presence necessary to make the community feel more tangible.

    3 - Keeping it open will make it easier for people to contribute. If you don't have a problem with the community generating content, then locking down an area can help people be more personal. However, if you need more content, then keeping it open will help create more discussions.
  • jj
    1. goals and discussions shouldn't be separated. Some threads will naturally flock to goals and tips/tricks, others will just be a discussion.

    2. it depends on how committed the national level is. If the national org can commit to the initiative, then they should take a lot of organizing/busy-work. If they can't, it might be up to the local levels to share stories they find interesting

    3. ask your community. If some of them want a restricted place to talk, then provide that to them
  • I'll kick off with my responses:

    1 - the site 43things.com does a lot of interesting work around goal-oriented sites. Or, be clear around a call-to-action within a discussion to encourage progression to goals

    2 - The main value I see is the ability at the local level to turn virtual connections into real connections.

    3 - Given that some people would like to share their personal experiences with the disease, locking down seems to make some sense...however, with the permission of your community, explore how you can make all discussions as open as possible.
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