it’s not about us. it’s about 114,609 people.

A couple of weeks ago, I wrote about a twitter analysis I did on 181 organ donor advocate accounts.  I concluded that organ donor advocates are mostly talking at ourselves (and that includes me.)  I also promised to write more about hashtags, re-tweets and amplification.  Today’s post fulfills that promise.

Before I get into the data, I need to share some thoughts about best twitter practices.

First, hashtags matter (in Twitter at least).  Using the power of a hashtag to search for people and trends creates opportunities for synergistic collaboration.  Check out

Second, it’s all about engaging.  I’ve written about this last July: “social media can be a door to creating more and better conversation about organ donation.”  I just returned from a conference last week on social media and the pharmaceuticals industry.  Several speakers commented on engagement.  Digital Health Coalition:  “1-way exchange is not authentic”;  “must listen and acknowledge what is being said if want to be socially successful” and InTouch Solutions “only pushing messages?  You’re not really social”.  Here is a great infographic about how most brand marketers are clueless about engagement.

Third, if you want amplification of your message, you need to build trust.  The social pharma participants also discussed the need to be human – to show that real people are doing the talking.  As Harrison Painter wrote in a blog article titled “Social Media is Not the Answer People!” amplifying is not the creation of anything, it simply makes something “louder or more powerful”.  Bottom line, if you have something well thought-out and meaningful, you are more likely to be amplified by others in social media.  If, as Painter writes, “you just want to blast out a message in the hopes that credit card transactions start flying into your shopping cart, then I have some bad news for you.”  I think a big part of earned media, is earning trust.  And a big part of earning trust is realizing it is not about YOU but it’s about the people.  As Roger Warner writes “Great ‘social brands’ enhance the ‘personal brands’ of their fans. Put bluntly: You make them look better.”


I selected 25 organ donor advocate twitter accounts (geez that is a mouthful) from my public DonateLife Twitter list.  I picked accounts with either the greatest number of followers or tweet volume (as of May 6).  I then pulled all tweets (n=249) for these accounts for May 24, 25, 26 and the morning of May 27 (US CST).  I then analyzed the tweets and profiles for the following six best practices:  re-tweeting, mentions, hashtag use, url inclusion, ability to see the human behind the account, and primary communication purpose of engaging.  If you want specifics on how I evaluated each of these items, send me an email – I’m happy to share!)


Nine accounts exhibited at least two best practices.  Accounts that re-tweeted the most were @65_RedRoses, @SaveLivesNY and @DonateLifeOH.  By re-tweeting, these folks are “earned media” for the original tweet creators, helping amplify messages and are more likely to be re-tweeted in return.

Accounts that excel in mentions were @65_RedRoses, @donors1, @SaveLivesNY, @DonateLifeOH, and @angelcove.  Mentioning others goes a long way to building relationships.

The best at hashtag usage were @65_RedRoses (used 8 different hashtags, only had 6 tweets of 22 without hashtag), @SaveLivesNY (used 5 hashtags, 8 of 13 with no tag), @DonateLifeOH (2 hashtags and 3 of 5 with not tag) and @LLTGL (used 4 hashtags, 8 of 11 with no tag).

Four accounts included urls in 100% of their tweets:  @DonateLifeVT, @DonateLifeOrgan, @angelcove and @kidneyquest. (Url inclusion is not always warranted, but generally, if you want to educate, it’s a good idea).

Donate Life Vermont

@DonateLifeVT twitter transparency

It was possible to see the human behind the curtain in four accounts.  @65_RedRoses (if you go to the website), @kidneyquest because a name is included and @DonateLifeOrgan because you can actually SEE Glenn Matsuki’s smiling face and his name. 🙂

Hands down the BEST twitter profile for being human is @DonateLifeVT.  Check it out.  Lauren and Sara – you rock!

Four accounts exhibited engagement as their primary communication motive – for example: thanking people, inquiring about people.  Great job @donors1, @SaveLivesNY, @DonateLifeVT, and @LLTGL!  Your sincerity really shows.


Nine accounts had no tweets in the sample period.  Hey, I have trouble tweeting every day myself.  Yet consistency is paramount.

Those nine accounts have over 12,000 followers (although surely there is overlap) yet one account appears defunct, two have not tweeted since April and one since February.

Of the 41 hashtags used, 29 were used only once or twice.  Only one hashtag is used consistently (30 times) #donatelife.  Folks, we simply have to quit re-inventing the wheel.  One national message PLEASE.  Sadly, #donevida was only used once.

who is behind the profile logo?

Also very sad that 48% of the time (12 accounts) there was no sense of the human behind the curtain.  Transparency is needed!

Finally, we are pushing our messages too much.  We need to find ways to create relationships, trust, and engagement.  By far the twitter volume (48%) is about promoting events, ourselves, or stories (albeit very good ones).  Only 18% of the tweets were more educational in nature – about donation information or 6% about medical information.  Only 2% of the volume was in anyway related to those waiting.

communication category for sample tweets

Next time:  Suggestions on different ways to engage

DISCLAIMER:  These comments are entirely meant to be constructive.  They are not indictments.  They are not comments on the hearts of advocates, the hard work of advocates or individual abilities.  Comments are just meant to question whether or not collectively we are effective at advocating.  This whole post is meant to challenge us to think.  The data is from a non-random snapshot in time and may contain some errors.  Truly, this is not personal.  As long as people are dying, as long as the gap between those waiting and available organs is growing, then we have to be willing to look hard at our collective effectiveness.  One last disclaimer – #iwork4dell.


2 thoughts on “it’s not about us. it’s about 114,609 people.

  1. In my opinion, this is a great effort to collect, measure and evaluate data. While your disclaimer clearly states that the information reported on is, “from a non-random snapshot in time and may contain some errors”, I felt that the purpose and spirit of the post was clear.

  2. Thank you Lem! I truly think we need to gather and evaluate more data on “marketing” efforts for donor registration, education and awareness. I believe we are still rather entrenched in event marketing and press releases. I often wonder if we are reaching the right audiences.

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