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Crash course given for Lupus Europe in the Convention held in Helsinki in September 2014 to explain why it is so important that patient associations are into social media (Twitter, Facebook, etc.) and all what they can achieve by being social. You may find more information and reports for this event at http://www.lupus-europe.org/activities/conventions/helsinki-2014/programme/session-details/article/leraning-about-social-media
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Social Media and Patient Associations
Nuria Zúñiga Serrano@tulupus
http://tulupusesmilupus.com
Spread the word!
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Why patient associations should use social media?
Patient associations have to be where the patients are
Average Time visitors spend on social networking sites per month
Nowadays patients spend most of their time in social media
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Patients look in the Internet for health info
72% of Internet users looked for health information online
Including seaches on serious conditions, general information and minor health problems
Pew Research Center’s Internet & American Life Project
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Support needed also in the digital space
They look for
symptoms
To figure out possible diagnosis
How to treat them
And find a miraculous cure for their chronic
illness
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Where patients get the information from?
Not many of them know that there is a patient association that can help them!
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
The world has changed
And patient associations must adapt to what rules the world
e-health
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Where should a patient association be?
It is very difficult to be in every single social network. We have to choose according to:
o My resources an knowledge
o Where is the people I want to reach
o What kind of information I want to share
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Resources and Knowledge
If you do something, do it well
Join a social network to get the best of it
Gain experience, followers and be outstanding one at a time
Being in too many networks may meannot enough time to attend properly all of them
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Where is the people I want to reach
By clicking , users can give visibility to our article or event.
They can it and it, enhancing the patient-association relationship.
Patient associations can also interact and help each other by sharing their statuses, events, etc.
Short and easy-to-read messages.
By the use of hashtags, anything can be spread and followed really quickly.
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Some tricks…
Use hashtags for events. It makes it easier for people to follow that event. They can also participate in it without being present
By creating lists, we can easily create contents for our followers and ourselves
In the event of not knowing what to share we can also retweet making our content viral and our presence stronger
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Impact of a tweet
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
What kind of info do I want to share
Different networks with different usages
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Image and Social Media
What people could think about patient associations
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Image and Social Media
What patient associations can be
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
It is easy to control social media
HealthCare
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Should patient associations have a webpage?
It gives you a better image
It is easy
It can be free
It provides quick access to information
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Impact of a webpage
If a single blog post is shared 130 times in Twitter and more than 4,000 times in Facebook…
…imagine what a whole webpage can do to spread lupus awareness!!!
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Lupus Europe 25th Annual Convention
Helsinki, September 2014
Social Media and Patient AssociationsSpread the word!
Thanks!
Nuria Zúñiga Serrano@tulupus
http://tulupusesmilupus.com
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