Social Networking

Social networking sites have seen a dramatic increase in popularity, leaving many advocacy organizations wondering the best way to engage with and integrate this technology into their organizations. Information on Facebook is shared below, but feel free to help us expand and include information on other social networking sites, such as MySpace and Twitter.

Social media can be a very useful tool for interacting with your community. Many organizations use social media (e.g. Twitter, Facebook and others) as a broadcast communication tool, updating their community and thepublic about progress or new developments with their registry or biobank. This is just the beginning. Social media can also be used strategically to listen to and engage with your community. Radian6 has created a wonderful resource, 30 ideas for your social media plan in 2012 that provides insight on how to use social media more effectively. Once your social media plan is in place, be sure to time your posts for when your audience is most likely to be listening.

Facebook

Where do I start?

Facebook has many different ways to be involved as an organization, such as Causes and Groups. It might be easiest to just start with your own personal profile so you understand what your constituents are seeing from the user side. "Friend them," watch their behavior, what attracts, what doesn't, join Cause Pages and Fan Pages of other non-profits and get their updates and announcements on Facebook and you'll pick it up. Or find a constituent/volunteer who's already "into it" and ask them to be a "virtual" volunteer leader of your Facebook presence to grow it organically. To learn more about Facebook pages, you can read "The Insider's Guide."

The following is one organization's take on how to use Facebook:

Eleni Tsigas

Preeclampsia Foundation

"When you do a Facebook Ad, including Boosted Posts, you can run it to current fans or with an exception criteria that does not include your current Fans. That being said, I would hesitate to boost ANY post unless there was a specific drive/aim in us doing so. Boosting it just to get visibility with no call-to-action is not an effective use of money. Driving general Likes on the other hand, does serve us well and is worth the investment, though if you ever got to the point where you had exhausted potential clients, I would recommend that you take a break for some time.

In addition, Facebook (and social media in general) raises AWARENESS, not funds. Email marketing is much better suited for that purpose, and better yet, peer-to-peer requests. Facebook does, however, remind people of important things like "Oh, I should go register for a walk and start fundraising." People make the mistake of assuming it is a panacea instead of one more tool in the communication arsenal.”

Causes

Any Facebook users will be able to see all your NonProfit's Cause Pages in one place that looks like this. But the NPO as an entity won't be able to manage relationships with these User-created Cause Pages without this approval from the Cause Application Company, Project Agape.

As an approved Partner, you'll be granted access to a different background ADMIN page that through a portal page that only organizations are be able to access. From there, you'll be able to "designate" which of all the Cause Pages out there is the "official" Cause Page of the organization from that ADMIN area. You can still need to create your own Cause page from the User side as a leader of the organization and then designate THAT one as the "official" Cause page. Or choose None as "official" and just receive donations as the chosen beneficiary of the multiple pages created to support your cause.

You'll also have options from your ADMIN area to "Manage Causes" and can "disassociate" any that you don't want to be associated with your Cause. You can also "Manage Donations," where you can see all your donors, download reports to add them to your donor database, have options for "thank them" using Facebook, etc. One point to be aware of: The official Causes Partner reports often list as Anonymous some contributions for which an individual donor is identified on the specific Cause page where the donation was made.(This depends on which box the donor checks at the time of the donation.) Unless you keep track of each associated Cause page, you will miss the opportunity to thank some donors who are identified on the individual Cause page but not on the Causes Partner reports. You can also administer Cause Petitions within your ADMIN area where you appeal for people to "sign" a collective petition advocating for some sort of change.

Then encourage any of your constituents who want to create their own Cause Page to do so and ALL of them can be set to "benefit" your 501(c)(3). Anyone can create a Cause page if they add the Cause application to their Facebook Profile. They can join lots of Causes and create multiple Cause pages for causes they care about. They "choose" who their Cause page will benefit from any nonprofit organization that is listed in Guidestar database.

Then keep creating ways in your campaigns/appeals/advocacy alerts to give your constituents a way to viral your message to everyone on their Cause page with "canned" text/graphics/links back to page on your website and you've got a movement. People always respond best to appeals made by people they know. Empower your constituents to be ambassadors of your messages. They get the experience of helping the cause they care about and have passion to share with others they know. You get people to reach more people with your appeals for the cause than you would ever reach in a top-down message delivery strategy.

More good information about Causes can be accessed from Facebook's Causes' FAQs and here.

Groups

Facebook Group pages are very easy to create also, but are more like an open or closed online group meeting space. Doesn't have near the tools for NPO communications and outreach and fundraising, but it has it functions. We have a group page for volunteers here, but we haven't done a lot with it except let it grow and share "news" posts and links. It's still grown to over 600 in last year.

An idea for patient privacy is to open your group page only to those who have signed up as members of your Association. Those who are NOT members, can be messaged as to their affiliation (I have a sister with this disease, my child has this disease…) The message is sent by going to the inquirer's own FB page and clicking on SEND A MESSAGE. It not only helps with patient privacy, but provides new members.

The only drawback to this system is if the person does not have the message ability on their FB page when one goes to message them to ask their affiliation….

Also, there are sometimes patients who, for various reasons, start another FB page on the same disease… these are usually not a big draw from the "official" disease page and serve a purpose for their group. One can ask them to be a Friend, posting when appropriate on these other pages, but not so often as to appear to be FB-stalking them.

10 Tips for Non-Profits on Facebook -

http://www.insidefacebook.com/2010/02/12/10-tips-for-non-profits-on-facebook

Discussion following #deleteFacebook in 2018

---"The HLRCC Family Alliance has wrestled with the use of the Facebook Group and other forums for some years. We made the Facebook group secret which means that not only are posts private, but the member list is also. As it is not found by search people have to find it via the website and send an email to contact and receive an invitation to join. Or people can add family and Facebook friends. We were finding nevertheless that there were limitations on long-term functionality with older posts being difficult to find if longer than a year or two old. About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

---"I’m glad to see you mentioning Smart Patients. I recently joined Smart Patients because of a health condition with which I was diagnosed. From the patient perspective, it seems superbly run, though I know absolutely nothing about what happens behind the curtain. I recently heard something that stuck with me. It was on a NPR program about Facebook moving to a pay for service model. “If you’re not PAYING for the product, you ARE the product.” One concern I have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients.com/faq#what-is-smart-patients."

---"When I was in charge of social media for The XLH Network, Inc., I resisted creating a Facebook group, for all the reasons that are now being addressed -- concerns about privacy, even in a closed group; the lack of email addresses for our database (so we didn't "own" the membership -- Facebook did); and dividing up our community into a variety of platforms. I don't know for sure that it was the right decision, but at least it meant that the Network has always had an alternative to Facebook in place.

The Network started as a listserv, and then the membership transferred to a forum. Unfortunately, forums aren't as easy/convenient to use as Facebook (although they offer a lot of benefits, including being able to organize responses by topic, which makes them highly searchable, and you can collect a lot of advice on repeat topics over the years), so it's difficult to get engagement there. But at least the nonprofit retains ownership of the membership, which it doesn't have with any interactions on Facebook, .

Since we had a forum already, we didn't need a platform like SmartPatients or PatientsLikeMe.com, and creating accounts with them would have split our community even further (some at Facebook, some at the Network's forum and some at these other platforms). Personally, both of those options worry me in much the same way that Facebook does, since they're FOR-PROFIT entities, based on their dot-com URLs.

To some extent, in this day and age, it's necessary to split the community and offer a variety of platforms for discussion -- some people just won't use a forum and some just won't use Facebook, and so on. (We considered creating a Google group, but just didn't have the experienced personnel to monitor it, and all platforms need monitoring.) So the Network maintains a Facebook page, but encourages taking private discussion over at the forum.

Just to throw out another concern with Facebook -- a few months ago, some consultants started stalking our patient community on Facebook. I don't even know how they did it, because I wasn't able to duplicate their search results, but they were able to find out who on Facebook mentioned XLH in their PRIVATE timelines/profiles. The consultants then sent private messages to those people to ask them to participate in some research. At first, we thought they were scraping info from people who posted to the Network's page, which was bad enough, but it appeared to go beyond that, to people who had never posted to the page, but mentioned XLH in their private timelines. I still don't know how they did that, but it's worrisome."

---"Our Facebook group pre-dates the organization that I run. I am heavily invested in it, but it’s not under our organization. I think for now it will continue to be most appropriate for our condition. I see a lot of benefits to the FB platform for our patient families - the cross talk with groups for comorbidities and the ability to message and friend other families. I’ve learned a lot about other patients from what they post outside of the group, just seeing their everyday lives, that helps me as a caregiver and as an advocate. That is one thing that you would never get from a stand alone forum. That said, it’s pretty clear that Facebook doesn’t really care about group users and there are plenty of frustrating things about the features for groups.

I’ve set up Vanilla Forums for another organization: https://vanillaforums.com/en/software/ We set up the self-hosted open source product, so it is free but has to be maintained. I think for most groups I’d recommend using their paid, hosted product though. It’s not cheap. I wonder if they may have some flexible pricing for non-profits though.

The Chordoma Foundation launched a community recently on this platform https://personifycorp.com/small-world-community/ I’ve been curious about that but don’t know anymore than what they have publicized about it.

I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me.

I think this is an interesting conversation, I’d love to see better platforms for our groups flower. But for us there’s not a strong need yet I think."

---"We have been struggling with this as well for several years now. The largest and most active private FB group for our patient community was started by a group of patients and is not administrated by us or any organization. From the very beginning I have been struggling to figure out community forum options because I never felt comfortable with a private FB group for all the reasons already stated here. So we did start a Smart patient community, but it hasn’t gotten the traction we had hoped.

We have discussed this often with the Genetic Alliance to see if there was a solution as part of the PEER platform. Since it is non profit and already has some strong privacy built into it, perhaps if enough of the groups on the PEER platform are interested it is something we could pursue.

Our other thought is to see if building out a private community forum from our CMS vendor is an option, so that we do have ownership of the members and can put privacy assurances into place. Has anyone gone this route?"

SmartPatients

"About three years ago an organisation called Smart Patients was started from a previous list forum called ACOR. It supports all medical conditions with a set of communities and we created one for HLRCC.The admin and IT support are second to none. We have encouraged the Facebook group to become members and about two thirds have 200 out of 300 The Facebook group continues but we have people in Smart Patients with no Facebook account so we have some cross communication issues."

"I signed up for SmartPatients to check it out and registered for a group (or tag in SP) for a brain condition relevant to our syndrome. I found it mildly glitchy (not terrible, but not thrilling either) and the group had seen very light use. I found that via tags in posts, I could access other conditions that I’m not sure I was supposed to be able to access. I think it could have potential, but it seemed like it may have lost momentum to me."

"SmartPatients has the concept that all conversations of all communities are accessible instead of having a separate silo for each condition. People can be members of several communities and can follow tags that they are interested in. This means that for example information about a particular drug side effect can be found across conditions. It is very open to any suggestion for improvement via a Site Feedback tag. You will always get a personal reply."

Twitter

Introduction

Twitter is a social networking site that begins with the question, "What are you doing?" Twitter is much more streamlined than facebook; user profiles are limited to name, location and a 140 character bio. Twitter status updates or "tweets" are also limited to 140 characters. They can include links to outside sites but cannot included embedded photos, video or other content. Twitter users can upload a profile picture and create a customized background for their page but cannot make further customizations.

Terminology

Tweet: A message/status update on Twitter of 140 characters or less.
@: Putting the @ sign before a twitter username (i.e. @geneticalliance) will create a link to that person's Twitter page within your tweet
RT or Re-tweet: When a user re-broadcasts a tweet written by someone else. These posts usually begin with "RT @twitteruser:" to give credit to the person who wrote the original tweet.
Hashtag or #: This is a way of denoting a keyword of conversation topic. The word after the hashtag is clickable and will bring you to a display of every other Tweet which contains the same hashtag. These can be used to create a meta-dialogue or to track the conversation about a certain topic. Sometimes groups will schedule chats on Twitter, which are identified by a specific hashtag. Users can join in the chat just by clicking on the hashtag or by using a third-party site such as Tweet Chat.

Twitter Clients

A Twitter client can often provide more features and functionality than the main website. Although your content still appears on Twitter, and is still subject to the same limitations, a small line underneath your post will let others know what client you are using; i.e. "via TweetDeck." Some clients allow you to manage more than one Twitter account from the same place, and many will also let you update Facebook, LinkedIn and other social media sites simultaneously. Some also allow you to schedule your tweets to post at a later time.

Here are some popular Twitter clients:

Best Practices

Follow people who follow you - If someone follows you, it is considered courteous to follow them back. If you are concerned that following too many people will clog up your Twitter stream, create a list of those most important to you so you don't miss out on anything they are saying.
Re-tweet - It's that simple. If someone says something funny, interesting or thought-provoking, share it with your network. It's a great way to get them to notice you and maybe remember you the next time you want your own content re-tweeted. Always make sure to start a re-tweet with "RT @username:" Twitter doesn't do this automatically when you click the re-tweet button; if you just click the button, your RT won't show up in their @ feed, so you won't get credit for helping out!
Get involved in the dialogue - Twitter is not a place for wallflowers. It's also not a place to constantly promote yourself or your brand. There is a place for that, but self-promotion should make up less than 10% of your tweets, on average. If you participate in the conversation and post content that is valuable to your followers, you will form lasting relationships which can translate to valuable partnerships on the web and in the real world.

Discussion Forums

Teen Discussion Forum

Teen discussion forums are online discussion sites for teenagers to share their stories and experiences with one another. People participating in the forum may cultivate social bonds and interest groups from a topic made from the discussions. Since participating teenagers will most likely be underage, it will require a different set of development and maintenance methods than the ones used for a regular discussion forum. Here are several issues to consider:

Who would be the administrator for such a site?

An administrator is necessary for two reasons:

Kids might end up inadvertently submitting incorrect medical information that could then go viral
There is the risk of improper posts (sexual, harassing, flaming content…)

Should a Listserv or a chat area be offered?

Again, both would require supervision and the time and effort of a staff member.

What other issues do I need to look out for?

There is a great deal of liability involved when dealing with any activity including minors. Some cyber insurance would not cover such an undertaking – at least not without resistance and a costly rider.

How do I keep up?

Tips provided by Jim Moore

Facebook

I did several things to keep track of FB activity—this is my plan. If it doesn’t work for you, please ignore it:

Regular searches for new groups and pages. Use the same search engine word strings you’d use on Google and mix them up. You will find them.
Join the groups...and be forthright about who you are.
1. If the groups refuse to admit you, infiltrate with another volunteer who is “just a parent.” Don’t use official organization reps for this. Just pick a “friend” you trust who’s not on the board or a committee, etc. and have them join.
Turn on “notifications” for each group. Turn on “email” in your notifications settings. Select ALL posts to the group for notifications.
1. Prepare for a deluge of email notifications.
2. Note that threads have “subject” lines, so if a thread does not pertain, sort by subject and delete the whole lot of ‘em.
Skim ALL subject matter looking for “opportunities.” (Prioritize to those message threads where real expertise is required.) I define opportunity as:
1. Newbie looking for solid info;
2. Misinformation;
3. “I dunnos”
4. And so on.
5. Above all, wait for “critical mass” to build in the message thread. If you respond to the initial post, only the questioner will see it. Wait until 15 or 20 people have chimed in and then drop it on ‘em. Thread participants will ALL get a notification of another post to the thread, and they’ll all benefit...and from an organizational marketing point of view, they will all see your organization in action at its best. (obvious exception would be for a critical item where time is of the essence...e.g. prenatal diagnosis or life-threatening situation or “the meeting at the school is tomorrow!”)
Generate boilerplate. Nothing is more time-consuming than writing the same thing over and over again, and freelancing every response introduces the opportunity for mistakes and omissions.
1. Remember: there are really only 10 to 20 questions – asked over and over again – perhaps many permutations, but the right guidance is still the right guidance.
2. Create a library of boilerplate by subject.
3. Save them in MS Word or similar so you can just open the file, copy and paste.
4. Embed links to info on your website prolifically. Drag them to your organization, and use the boilerplate as a preamble to say “find this here and find that there.”
  1. My philosophy is to never simply hand it to them. Instead, act like a library and have them come and get it. This way, they learn about the library, and they know to come to the library next time they have a question.
5. Disclose that it’s boilerplate with a custom intro such as, “[Name], We have guidance on this subject. This is a far more comprehensive response that your answer may require, but you may find it helpful. You may wish to save this for future reference. [insert boilerplate]. At the end of each boilerplate response, remind the reader that it’s boilerplate and point them to where they can find more info.
6. Name the files “boilerplate-[subject}” so you can find them using Windows Explorer search tools.
7. Keep the boilerplate up-to-date. This is more work than it might seem, because most boilerplate ends up littered with hyperlinks to docs on your site and elsewhere, and much of the baseline guidance needs regular review.
8. Don’t be afraid to be comprehensive. I always got rave reviews on the boilerplate and many “secondary” thank-yous from other readers in the thread.
Be strategic. Don’t “helicopter.” Respect the group and just “show up big time” when it really counts.
ASK PERMISSION: before posting things like events, research recruitment, fundraising and so on. Most will be accommodating, but if they say “no fundraising” or “just the specific variation we serve”, it’s their group.
DEBATE: inevitably you’ll encounter some preposterous nonsense or another that can’t be ignored. Debate vigorously but respectfully, and then TRUST THE AUDIENCE to know the difference between nonsense and solid info. Your debate “opponent” will never admit being wrong or admit “defeat,” so that’s not a goal. Make your points well and respectfully, then walk away. (easier said than done sometimes, and this is NOT my forte’) J.

You just read all that. I don’t have to tell you that it’s tons of work. But so is a conference, creating a website, publishing booklets and so on. This is currently where the people are (social media), and you need to go to where the people are and meet them on their turf.

Get help. If you have several volunteers you truly trust, give them your login. Yes, let them impersonate you....within strict guidelines. This is the beauty of boilerplate. The words are tried and true...vetted. Your surrogates are just that...clones who have strict marching orders. And because they are using “your” accounts and memberships, you can see everything they do as they do it. Supervise and train. It will pay off quickly and give you time to focus on other things while still having a huge (or in today’s political vernacular Yuuuuge!) social media presence.

Twitter

Twitter is even bigger than this, and it involves lots of one-on-one engagement to build followers and pay your dues with those followers. Suffice it to say that Twitter is all about mutual back scratching. I’ll reserve that for another time.

Use Multiple Social Media Profiles

If you are using your personal profile, the one with photos of your cat and thoughts on the upcoming election, stop. You’re bound to alienate lots of people with your “other” posts.

Your organization profile should be utterly bland on every front other than the organization’s mission.

Create a new, organization-specific profile and use it exclusively for the organization’s messages. Then create a second profile in case Facebook gives you a “time out” for misbehavior of some sort. (too many friend requests, too many duplicate posts to too many groups, etc.) I have two professional profiles:

First Name Last Name
First Name Executive Director

They are otherwise identical in virtually every way, so readers really can’t tell one from the other.

Using these methods, I was able to actively participate in approximately 25 Facebook groups worldwide (including 4 condition-specific groups where I was admin), multiple Facebook pages, and 3 Twitter feeds with thousands of followers. I used “push” tools in Constant Contact to push content to the pages and Twitter, and then I relayed that content to “friendly” groups worldwide. All of that content was very easy to distribute, and the degree to which it was welcomed was directly related to the relationships developed with the other independent groups’ admins.

Questions and Answers

How has your organization responded to requests from families who want to start a group on Facebook? Is it better to start one as an organization in order to keep control?
- We did start our own Facebook Group and Cause so that we would have some control. We have raised a couple hundred dollars on the site (with literally no work).
- We have a Facebook Causes page and our members have their own Facebook pages. Then they can join our Facebook cause and leave comments and such on the cause page and information on their own pages.
- I think there are several issues to think about here. One is whether you can show up on every blog, online group, MySpace or Facebook venue. I think they are just going to proliferate & at some point you can't control the space/content/representation. The terms and conditions of these online spaces are widely variable. In some everything that's shared/written becomes the property of the sponsor who can edit, use, re-publish or use for publicity. There is no privacy, no ownership, no accountability. Though they seem like "safe spaces", many of them are filled with both spammers and porn folks. Also, many sites are searchable by google or other search engines. Cyberspace is notoriously hard to control, if control is a top priority of the organization. That too requires an investment to maintain. On the other hand, presidential candidates have gotten elected recently using these social networking tools successfully and raised $500 million online, largely from people giving $100 or less.

What happens if other Facebook Groups or Causes exist for the same condition as mine?

We as an organization (Cystinosis Research Network) started a Facebook cause (which was very straightforward to do) under the title "Cystinosis". We've raised a few hundred dollars and have had nearly 1,000 join the cause with almost no effort.

We've recently run across another cause for cystinosis which was started by someone we aren't familiar with. Donations are going to the other advocacy group in the U.S., which is fine, except he used our logo, website address and vision and mission information. I've "facebooked" the cause administrator just to point out the inconsistency and the confusion it might provide for possible donors with no response back.

Finally, one of our medical advisory board members decided to start a CRN Facebook cause herself, as she didn't find CRN when she searched (our fault, should have titled our cause "CRN" specifically, not the general "cystinosis"). Donations from her cause go to CRN, and frankly, she did a much nicer job than us in setting it up! We've decided that having the two sites is complimentary in the end.

I guess my point is that Facebook is a fairly uncontrolled space, putting your organization as a cause can provide very easily collected modest donations and raise awareness, but there is always the possibility (as in many situations, I suppose, like blogs, etc.) where other individuals can use information from your organization without your knowledge, which may or may not lead to any significant misunderstandings or harm.

How does a group go about getting permission to use photos from conferences on social media websites and in enewsletters? Additionally, if photos are used on Facebook, how does 'liking', 'sharing', and 'tagging' interact with privacy violations?

Team Sanfilippo has a Facebook page and a private MPS community page as well. We have put posts up on occasion asking permission and parents have responded in several ways. Some have said use whatever you see online of my child, others have sent us a few pictures and and some have said to take anything from their child's personal site we want. So we print those threads out in case of an issue down the road. We've never run into any issues so far.
We have a photo/video release at our conferences that we ask families to sign, which basically is a waiver for any electronic or print distribution. However, sometimes families just send us photos via email, etc., to be used in our newsletter and don’t necessarily provide a formal release. For many years before we had an electronic newsletter, the pictures were used in our print newsletter. However, we have now decided to implement a policy wherein we obtain a formal release for use of any photos submitted by any mechanisms. I do have to make the disclaimer that we try not to identify any minor by name in photos. We do have a FB page, and we have “turned off” the ability for anyone other than the administrator to upload photos and our policy is not to upload any photos organizationally of patients. We also have a private password protected online community which does allow the user to upload pictures to their personal page. The community use agreement contains a disclaimer to the effect that although the site is private and password protected, we are not responsible for and cannot protect against the potential use of the photos outside the online community (because a member copies it and uses it elsewhere).