This document discusses the use of social media for health research. It provides examples of social media platforms that have been used since 1995 for connecting patients online to discuss health conditions. Researchers are encouraged to engage with patients on social media and online platforms to disseminate their research and learn from patients. Tracking the impact of research through various online channels and engaging in open access publishing is also discussed as important for maximizing the reach and benefits of health research.

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. 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. 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. Social Media - Tsunami.... (2010)

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. WHAT IS SOCIAL MEDIA?

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. 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. 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. What is for you?
https://www.slideshare.net/kennethhellem/killing-your-darlings-46489
080

11. What is your name?

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. 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. 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. Engage with patients

16. Search Engine
Optimization of your
research

17. Paper - multichannel!!

18. Paper - multichannel!!

19. Paper - multichannel!!

20. Open Access key to impact!

21. Track your impact!

22. Track your impact!

23. Popular science and journalist!