Talk I gave at the College of Medical Science and Technology - Taipei Medical University. The topic was about the use of technology for participatory and open health.

1. Social Media for
Participatory Health
Research
21st December 2017
L. Fernandez-Luque
lluque@hbku.qa.edu
eHealth Researcher
Co-chair IMIA Social Media
Working Group
Qatar Computing Research
Institute, Qatar
@luisluque

2. “Health is a state of complete
physical, mental and social well-
being and not merely the absence
of disease or infirmity.”

3. Consumer Health Informatics
Eysenbach, Gunther. "Consumer health informatics." British medical journal 320.7251
(2000): 1713.
Consumer Health Informatics is the field devoted to informatics
from multiple consumer or patient views - AMIA Website

4. Consumer Health Informatics
Consumer Health Informatics is the field devoted to informatics
from multiple consumer or patient views - AMIA Website
http://www.mii.ucla.edu/research/areas/

5. What is
Participatory
Health & Patient
Empowerment

6. Health is not the absence of disease
Source: Share your ink group (www.tudiabetes.org)

7. Is health social media new? (1995)
©1995-2016 ACOR, Inc. All
worldwide rights reserved.
https://commons.wikimedia.org/w
iki/File:Clinton_Yeltsin_1995.jpghttps://www.washingtonpost.com/news/wonk/wp/2013/03/
29/what-the-internet-looked-like-in-1995/

8. Early definition - Medicine 2.0 (2008)

9. Participatory Medicine
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.

10. The need of patient empowerment
UK Department of Health (2005) Self care - a real choice; self
care support - a practical option.
http://www.dh.gov.uk/assetRoot/04/10/08/92/04100892.pdf

11. History of Participatory Health
Tom Ferguson MD (died in 2006)
Coined the term e-patient
“e-patient: how they can help us
to heal health care”
Slide adapted from Fernando Martin (@fermarsan)

12. Patient Empowerment
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

13. Health is more than disease

14. Health is more than disease

15. Health is more than disease

16. Patientslikeme
Slide adapted from Fernando Martin (@fermarsan)

17. Genetics and Social Media

18. 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

19. Social Media - (patient) Research

20. Pervasive Health &
Quantified Self

21. Image: The
Economist
Slide adapted from Fernando Martin (@fermarsan)
The Quantified Self
Quantified Self is a collaboration of
users and tool makers who share an
interest in self knowledge through self-
tracking.

22. The continuum of health data
Weber, Griffin M., Kenneth D. Mandl,
and Isaac S. Kohane. "Finding the
missing link for big biomedical data."
Jama 311.24 (2014): 2479-2480.
QUANTIFIED
SELF &
SOCIAL
MEDIA

23. Quantified-self approach providing a holistic (360-degree)
view of the user, by integrating rich information about an
individual’s health, including:
● physical activity sensing from wearable activity trackers
● general health data such as age, weight, height etc.
● health factors (e.g. social influences) gathered from
social media
● Activity and environment sensing from mobile apps
What is 360QS? [1]
1. H. Haddadi, F. Ofli, Y. Mejova, I. Weber, and J. Srivastava, “360-
degree quantified self,” in Healthcare Informatics (ICHI), 2015
International Conference on, pp. 587–592, IEEE, 2015.

24. Quantified Self for Health
Social Computing + Quantified Self = Sensing for Public Health
Non communicable
Diseases - Influences and
risk factors
Social Structure
(age, sex, ethnicity,
income)
Environmental
(Geolocation, housing,
weather, etc)
Lifestyle
(physical activity, diet,
psychosocial factors)
Public Health Dashboard
A dashboard to health public health
authorities
QHS360
Tools for patient empowerment
Physiological
(blood pressure,
diabetes, obesity)

25. 360QS - Quantified Self for
Obesity
Fernandez-Luque, Luis, et al. "Implementing 360° Quantified Self for childhood
obesity: feasibility study and experiences from a weight loss camp in Qatar." BMC
medical informatics and decision making 17.1 (2017): 37.

26. 360QS - Quantified Self for
Obesity
• Woman used more the technology (both girls and
mothers)
Fernandez-Luque, Luis, et al. "Implementing 360° Quantified Self for childhood
obesity: feasibility study and experiences from a weight loss camp in Qatar." BMC
medical informatics and decision making 17.1 (2017): 37.

27. Gender and human factors

28. Predicting Sleep Quality using Physical Activity (Dataset: 97
adolescents in Qatar)
Deep Learning and Sleep
CNN had the highest specificity and sensitivity, and an overall area under
the receiver operating characteristic (ROC) curve (AUC) of 0.9449, which
was 46% better as compared with traditional logistic regression (0.6463)

29. Creating Tools to Support
Decision Making
Aupetit, M., Fernandez-Luque, L., Singh, M., & Srivastava, J. (2017). Visualization
of Wearable Data and Biometrics for Analysis and Recommendations in Childhood
Obesity. IEEE CBMS 2017 preprint arXiv:1705.03691.

30. Wearables for Diabetes Management
E. Arsand, M. Muzny, M. Bradway, J. Muzik, and G. Hartvigsen,
“Performance of the First Combined Smartwatch and Smartphone
Diabetes Diary Application Study,” J. Diabetes Sci. Technol., Jan.
2015.

31. Gamification for
Participatory
Health

32. Gamification elements
https://www.gamified.uk/user-types/gamification-mechanics-elements/?pdf=4792

33. Gamification elements
https://www.gamified.uk/2014/11/03/game-mechanics-gamification-revisited/
Marczewski, A. (2015). User Types. In Even Ninja Monkeys Like to Play:
Gamification, Game Thinking and Motivational Design (1st ed., pp. 65-80).
CreateSpace Independent Publishing Platform.

34. Do something – UNLOCK, COLLECT,
SHARE
https://www.youtube.com/watch?v=Cu3NRoK15PQ

35. Play and fun
https://www.youtube.com/watch?v=bbqTOdGU_NA

36. Play and fun
https://www.youtube.com/watch?v=bbqTOdGU_N
A

37. It works – early games - diabetes
Brown SJ, Lieberman DA, Germeny BA, Fan YC, Wilson DM, Pasta DJ. Educational video game for
juvenile diabetes: results of a controlled trial. Med Inform (Lond). 1997 Jan-Mar;22(1):77-89.

38. It works – early games - diabetes
Brown SJ, Lieberman DA, Germeny BA, Fan YC, Wilson DM, Pasta DJ. Educational video game for
juvenile diabetes: results of a controlled trial. Med Inform (Lond). 1997 Jan-Mar;22(1):77-89.

39. Game and Gamification!

40. Fun Stairs

41. Fun Stairs
https://www.youtube.com/watch?v=2lXh2n0aPyw

42. Boy, take the pill!
http://www.cbcpharma.com/pro
ducts/mercapto_tablets.jpg
http://images.clipartpanda.com/
nausea-clipart-nausea1.gif

43. Boy, Kill them all (Cancer Cells)!!
http://www.re-mission2.org/

44. Re-MISSION – Killing Cancer Cells

45. Re-MISSION – Killing Cancer Cells
Kato PM, Cole SW, Bradlyn AS, Pollock BH. A video game improves behavioral outcomes in adolescents
and young adults with cancer: a randomized trial. Pediatrics. 2008 Aug;122(2):e305-17. doi:
10.1542/peds.2007-3134.
• Improved adherence to
oral treatment
• Improved knowledge of
cancer care
• Translated in several
languages
• Available also for mobile
phone

46. Re-MISSION – Killing Cancer Cells
Cole, Steven W., Daniel J. Yoo, and Brian Knutson. "Interactivity and reward-related neural activation
during a serious videogame." PLoS One 7.3 (2012): e33909.

47. App, Social, Gamification - Diabetes
Gomez-Galvez P, Suarez Mejias C, Fernandez-Luque L. Social
media for empowering people with diabetes: Current status and future
trends. Conf Proc IEEE Eng Med Biol Soc. 2015;2015:2135-8. doi:
10.1109/EMBC.2015.7318811.

48. Fun and social: Big Blue Test
https://myglu.org/articles/big-
blue-test-results

49. Exercise is fun - Tamagochi

50. Run, there are Zombies!

51. Run, there are Zombies!
https://zombiesrungame.com/

52. Fun and social (Sjekkdeg.no)

53. Fun and social: Sjekkdeg.no
E Gabarron, Avatars using computer/smartphone mediated communication and social networking in prevention of
sexually transmitted diseases among North-Norwegian youngsters BMC Medical Informatics and Decision
Making 2012, 12:120

54. Play to Nature

55. Fun and social: Research 2.0
Good BM, Loguercio S, Griffith OL, Nanis M, Wu C, Su AI. The cure: design and evaluation of a
crowdsourcing game for gene selection for breast cancer survival prediction. JMIR Serious Games. 2014 Jul
29;2(2):e7. doi: 10.2196/games.3350

56. Open and
Participatory
Academic Publishing

57. Open Science - sharing with the world
http://ec.europa.eu/research/openscience/images/monitor/science-nav.png

58. Where to Publish - Open Access (1/2)
http://book.openingscience.org/tools/open_access_state_of_the_art.html

59. Where to Publish - Open Access (2/2)

60. SEO of Yourself!!! - Make yourself visible

61. Multichannel Marketing of your work

62. Multichannel Marketing of your work

63. Multichannel Marketing of your work

64. Disseminate your work (MOOC)
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.

65. Disseminate your work (MOOC)
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).

66. Disseminate your work (MOOC)

67. Almetrics – beyond impact factor (1/2)

68. Almetrics – beyond impact factor (2/2)

69. Participatory Health for
Cancer Coaching

70. Living with cancer
http://www.sitcancer.org/clinician/resources/melanoma/side-
effects

71. Owise – supporting self management

72. Patient self-reported outcomes – it works!

73. Wearable fitness trackers to support
physical activity in breast cancer
“Wearable Activity Trackers are
perceived as useful and acceptable
interventions by postmenopausal breast
cancer survivors” – Study findings
Nguyen, Nga H., et al. "A qualitative evaluation of breast cancer survivors’
acceptance of and preferences for consumer wearable technology activity trackers."
Supportive Care in Cancer (2017): 1-10.
“If you get to say 8,000 [steps] in a day,
you're more motivated to do those extra
2,000 because you're so close. It's like
“Why would I stop now?” I might as well
keep going.” - 52 patient participant
http://www.pcadvisor.co.uk/reviews/
gadget/3495685/fitbit-force-review/

74. Monitoring physical activity (Sensearm)
Cerada E, et al. Assessing energy expenditure in cancer patients.
JPEN J Parenter Enteral Nutr 2017, Nov/Dex, 31(6): 502-7
Energy Expenditure to support
nutritional advice in patients with
Leukemia

75. Sleep, Stress and Cancer

76. CATCH: Cancer - Activating Technology
for Connected Health
8 PhD Students across Europe (and soon in
TMU) – More Information (www.catchitn.eu) EU Project 722012- MSCA-ITN-2016 -
Innovative Training Networks

77. https://www.futurelearn.com/courses/digital-cancer-management/1/

78. Things to remember
● Open science has more added value
than closed
● Patients are not “subjects” for your
research, but a highly valuable
resource.
● Your work is for the society.
● Social Media increases your impact
● Participatory Health and Social Media
is complex, ask and study before
doing.

79. Luis Fernandez-Luque
Qatar Computing Research Institute
lluque@hbku.edu.qa
@luisluque
https://www.slideshare.net/luis.luque
Thanks