SOCIAL MEDIA COMMUNICATION

Transcription

1 SOCIAL MEDIA COMMUNICATION SOCIAL MEDIA COMMUNICATION IN PRACTICE FOR PATIENT ADVOCACY & DISEASE AWARENESS Denis Costello Web Communications Officer, EURORDIS

2 About me? 2 Responsible for Web Projects for EURORDIS European Rare Disease Organisation eurordis.org rarediseaseday.org wiki projects e.g. raretogether.eurordis.org social media strategy & implementation 390 members (Federations, Alliances and Patient Groups) in 39 countries 1200 diseases Working more and more closely with European Cancer Patients Coalition

3 3 Social Media:

4 Facebook: 4 The World s most popular Social Network 200 million users worldwide Increasingly used by patients for sharing, fundraising and awareness campaigns

5 5 Facebook: Event Promotion

6 6 Facebook: Outreach

7 Facebook: Other uses 7 Donate your Status Send pictorial/logo type gifts Newsletter style push communications Develop custom applications

8 Twitter: 8 Twitter = SMS of the internet 140 letter limit to tell your story Used to broadcast status messages Used also as a networking tool

9 9 Twitter Networking:

10 Twitter Trending & Searching Search twitter - Monitor trends - Real Time Monitor

11 11 Twitter Trending & Searching

12 YouTube & Flickr 12 Putting a face on a disease Uniting participants in a campaign through photo/video sharing Power of patient testimony to affect change Not enough communicative images & stories for certain diseases

13 Social Media Strengths/Weaknesses: 13 Strengths Opens up new channels of communication Highly participative Collective problem solving aka Wisdom of Crowds Weaknesses Potential for abuse Does it render the patient organisation obselete? Care needs to be taken to make it representative i.e. not just the load voices are always heard

14 EURORDIS & Social Media : 14 Experience with mailing lists since 2005 Developped Charter of Good Practice for Online Patient Communities 1 st Feasability study for development of Patient Centric Web2.0 tools (2008) Research visit to USA (mid 2008) Rare Disease Day (2009) Online Community Portal for Rare Diseases (2009)

15 Research in USA: 15 Visits to leading e health websites & patient advocates duchenneconnect.org researchcrossroads.org patientslikeme.com webmd.com American Cancer Society i2y.com

16 Young Cancer Survivor Networks: 16 Nearly 70,000 Americans between are diagnosed annually 10,000 will not survive numbers 7x greater than those in pediatrics. no improvement in the 5 year survival of young adults since Young adults also face unique issues that are not currently being met by the current continuum of care: fertility, isolation, insurance, dating/sexuality, financial assistance, education, employment and age appropriate peer support such as social networking, both off and online. The last 30 years of cancer 'progress' have failed the next generation of survivors so there is no reason to think the next 30 will be any different unless change happens now Source: i2y.org

17 Young Cancer Survivor Networks: 17 i2y.org (I m too young for this) USA no surrender.org UK jeunes solidarite cancer.org FRANCE

18 Young Cancer Survivor Networks: 18 i2y Founded by cancer survivor Matthew Zachery

19 i2y: 19 Leading e-health websites & patient advocates

20 20 i2y facebook:

21 21 i2y internet radio show:

22 22 i2y facebook:

23 Young Cancer Survivor Networks: 23 no surrender

24 24 No Surrender (Home):

25 25 No Surrender (Twitter):

26 26 No Surrender (Ning):

27 27 No Surrender (Ning):

28 28 No Surrender (YouTube):

29 Rare Disease Day: 29 Raising Awareness Worldwide for Rare Diseases. Started in 2008 by EURORDIS and European Rare Disease National Rare Disease Alliances + Canada & New Zealand 28/2/08 Leap Year = Rare Day = Rare Day for Special People 2009 was 2 nd Rare Disease Day US, China, South America involved for 1 st time

30 30 rarediseaseday.org:

31 31 Rare Disease Day: Facebook

32 Rare Disease Day: Facebook 32 Hi Denis, My name is Jill and I am a graduate student at the Columbia Journalism School. I am writing my master s project about families suffering from rare diseases, and was hoping you might be able to help. I am looking for several people in New York who would be willing to speak with me about your experiences, treatment and how you cope with your condition day to day. Ideally, I would like to find people whom I can follow for the next few months, firstly, so that I can give readers a real sense of the challenges associated with these conditions, but more importantly, so that I can show readers the people and the families behind the obscure names and medical jargon. Would you or anyone you know be interested in participating in such a project? I am also hoping to speak with many others either over the phone or in person over lunch, coffee, or a drink. Please let me know if you might be interested. I am kind, trustworthy and dependable, and would love to hear your story. Hoping to hear from you soon! All the best, Jill

33 Rare Disease Day: Facebook 33 Bonjour, Je me permets de vous écrire car nous avons appris le 26 août dernier que notre fille Charlotte était atteinte de la maladie de Sanfilippo ( sanfilippo.ch), nous nous sommes permis de mettre un lien sur le site RareDiseaseDay. Nous souhaiterions prendre contact avec vous afin d'organiser le 28 février prochain un événement en Suisse. A très bientôt, Frédéric

34 34 Rare Disease Day: Facebook

35 35 Rare Disease Day: YouTube

36 36 Rare Disease Day: YouTube

37 37 Rare Disease Day: YouTube

38 38 Rare Disease Day: YouTube

39 39 Rare Disease Day: YouTube

40 Rare Disease Day: YouTube 40 Hey. I loved your post about PKU. My friend has it, and in everycase, didn't catch it very fast. He is very kind and sweet hearted, but many people make fun of him over it. I need some advice to give him about to ignore the insults. What does not help him is that he always is getting made fun of because he is vastly over weight. Any help? You can E mail me at. Thank you soo much for reading this and hopefully you can seek some time out of helping your pretty Katie and give me a little advice to pass on to Adam. My name is, by the way, and I'm 13. There isn't any rush at getting back to me. Thank you!

41 Rare Disease Day: Flickr 41 A Community for a group of people living with a rare disease.

42 Rare Disease Day: Flickr 42 A Community for a group of people living with a rare disease.

43 Rare Disease Day: Flickr 43 Added flickr photos to homepage of rarediseaseday.org

44 Rare Disease Day: CNN 44 Added flickr photos to homepage of rarediseaseday.org

45 Rare Disease Day: CNN 45 Added flickr photos to homepage of rarediseaseday.org

46 46 Rare Disease Day, Twitter:

47 47 Rare Disease Day, Twitter:

48 48 Rare Disease Day, Twitter:

49 Lessons: 49 Social Media enabled us to reach a new audience Enabled a community spirit Helped raise awareness Acted as contact medium Provided new ability to network Enhanced our role as a patient organisation

50 Suggestions: 50 Think about your goals Awareness Information Support Fundraising Event promotion Advocacy Design a message and chose your modes of social media Outreach strategy with your own site Try to evaluate and monitor effectiveness

51 Thank you! 51 EURORDIS 102 rue Didot Paris FRANCE