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Social Media for Health Research

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Turorial run in summer school of www.catchitn.eu and www.chessitn.eu

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Social Media for Health Research

  1. 1. Social Media for Health Research #CATCHITN @luisluque www.catchitn.eu This project has received funding from the European Union’s Horizon 2020 research and innovation program under the Marie Sklodowska-Curie grant agreement No 722012 This project has received funding from the European Union’s Horizon 2020 research and innovation program under the Marie Sklodowska-Curie grant agreement No 676201
  2. 2. Is health social media new? (1995) ©1995-2016 ACOR, Inc. All worldwide rights reserved. https://commons.wikimedia.org/wi ki/File:Clinton_Yeltsin_1995.jpghttps://www.washingtonpost.com/news/wonk/wp/2013/03/2 9/what-the-internet-looked-like-in-1995/
  3. 3. Is health social media new? (2001) https://en.wikipedia.org/wiki/ George_W._Bush#/media/Fil e:Defense.gov_News_Photo _010917-D-9880W-034.jpg “Thanks to the wonders of the Internet, anorexics and would-be anorexics around the globe can access more than 400 web sites designed solely for them.” “these web sites provide not only reinforcement, along with a forum for exchanging and picking up tips”
  4. 4. Social Media - Tsunami.... (2010)
  5. 5. What is Social Media, Health X? X.0? “Health 2.0/Medicine 2.0 is still a developing concept. Our study identified 46 unique definitions of Health 2.0 and Medicine 2.0 with seven recurrent topics”
  6. 6. WHAT IS SOCIAL MEDIA?
  7. 7. Participatory Health Regina Holliday The Society for Participatory Medicine defines participatory medicine as a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which medical care providers encourage and value them as full partners. Slide adapted from Fernando Martin (@fermarsan)
  8. 8. Social Media - (patient) Research “(after the paper was published) the number one email we got was from parents of children suffering from Williams-Beuren (syndrome)” http://ngm.nationalgeographic.com/2011/03/taming-wild-animals/ratliff-text/2
  9. 9. MOOC - Massive Education and feedback Atique, Suleman, et al. "Lessons learnt from a MOOC about social media for digital health literacy." Engineering in Medicine and Biology Society (EMBC), 2016 IEEE 38th Annual International Conference of the. IEEE, 2016.
  10. 10. What is for you? https://www.slideshare.net/kennethhellem/killing-your-darlings-46489 080
  11. 11. What is your name?
  12. 12. Questions to ask yourself • Impact at different levels • Personal reputation - where? • Feedback from whom? • Visibility for what? • Personal views: • We do that for patients-society - General Public • I want to learn from the best - targeted feedback from experts • Close science with public = fraud-corruption • Learn, learn, learn outside the office. • No citations = irrelevance (aka waste of time) • No impact outside academia = irrelevance in society (aka waste of money, time and talent)
  13. 13. Engage with patients!!!! Gómez-Zúñiga B, Fernandez-Luque L, Pousada M, Hernández-Encuentra E, Armayones M. ePatients on YouTube: Analysis of Four Experiences From the Patients' Perspective. Med 2.0 2012;1(1):e1 ...And part of why I started my blog in the first place was because, even though I’ve lived with diabetes for such a long time and I didn’t known (sic) anyone else who had it, and I literally felt like the only diabetic on the planet. [KS] I met so many people from all over the world that I would never have been able to talk to, before the Internet of course, and then now, with the MS community on YouTube it’s incredible. [VB] https://www.youtube.com/watch?v=lc9hA4gmlhw https://www.youtube.com/watch?v=Fb8_k-VIg4k
  14. 14. Engage with thousands of patients Atique, Suleman, et al. "Lessons learnt from a MOOC about social media for digital health literacy." Engineering in Medicine and Biology Society (EMBC), 2016 IEEE 38th Annual International Conference of the. IEEE, 2016. MOOC course on Internet of the Things for Healthy Ageing: ● The course was launched in October 2016 and 4,053 people participated (1,597 active users who generated 2616 comments). ● Interestingly, we performed a survey showing that most participants were people over 60 years old from 85 different countries (but mostly from Europe).
  15. 15. Engage with patients
  16. 16. Search Engine Optimization of your research
  17. 17. Paper - multichannel!!
  18. 18. Paper - multichannel!!
  19. 19. Paper - multichannel!!
  20. 20. Open Access key to impact!
  21. 21. Track your impact!
  22. 22. Track your impact!
  23. 23. Popular science and journalist!

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