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Patients' Organizations and Social Media: Report from the Platelet Disorder Association
by IAPO at 4:24PM Tuesday 03 July 2012 (News)

Last year, IAPO member the Platelet Disorder Support Association (PDSA), based in the United States, recieved a grant through IAPO's pilot of the Member Support Fund.

PDSA is an organization dedicated to enhancing the lives of people with immune thrombocytopenia (ITP) and other platelet disorders through education, advocacy, research, support and communication.

John Boyle, Director of Development at PDSA explains how they used the grant to increase their social media impact and shares some tips on social media:

Patients' Organizations and Social Media

By now, everyone is aware of the growing importance of social media platforms to patients' organizations like ours. One of the problems, though, is figuring out how to manage a social media presence on a limited budget and with limited time.

Through IAPO’s pilot Member Support Fund, PDSA was awarded a six-month grant in 2011 that allowed it to test a social-media management solution named Thrive. Thrive is web-based software that organizations to develop key relationships online through social networks and includes a range of reporting and analytics tools.

While PDSA has been active in social media for a number of years, Thrive was found to be a helpful tool. It was especially useful in minimizing the time that PDSA staff spent posting messages. On average, less than two hours per month was spent writing and scheduling Facebook and Twitter posts for nearly every weekday of that month. It also helped provide useful data that allowed us to optimize the timing and messaging of our posts as the months went on.

However as useful as we found this tool to be, the social media landscape is ever-changing; and just prior to the publication of this article – Facebook itself launched a post scheduling feature that replicates some of the features that made Thrive so useful. This means that we will want to, once again, revisit how we manage our social media presence.

With that in mind, here are a handful of suggestions for those of you who are just beginning to develop your organization’s social media approach:

  • Figure out which social media platforms your constituents are currently on, and focus solely on those. Avoid the temptation of chasing “the next big thing,” until it’s proven to be a winner
  • Use pictures in your posts whenever possible
  • Have someone do your posting who uses that platform in their personal life. If you can’t capture the “voice” or style of that platform, you probably won’t capture their interest
  • It takes time to build an audience. Be diligent, but be patient
  • It’s about quality, not quantity. It’s better to have 100 people who follow you faithfully, rather than 10,000 who “liked” your page because of a special campaign, but who never visited again
  • Wish your community well on important (or fun) holidays
  • Be careful of any long-term monetary investments. Something that one company does for a fee today, ten other companies may offer for free tomorrow
  • Surprise people every once in a while with something offbeat and fun

Regarding that final point, we usually follow a rough schedule with our posts: membership Monday, treatment and technology Tuesday, wellness Wednesday, and fundraiser Friday. And while our community responds to the diversity of our posts, simply posting “Wishing everyone high platelets today!” generates an enormously positive response.

Each of our organizations has different resources and challenges in dealing with social media, so there’s no template for success. But if you start small and experiment with your outreach, you will likely find a path that both your organization and your patients find valuable.

John Boyle, Director of Development
PDSA

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