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Social Media for Empowering Persons with Type 2 Diabetes

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Presentation at the 2nd Servier Diabetes Summit. 12 Jan 2019, Singapore.

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Social Media for Empowering Persons with Type 2 Diabetes

  1. 1. SOCIAL MEDIA FOR EMPOWERING PERSONS WITH TYPE 2 DIABETES IRIS THIELE ISIP TAN MD, MSC Professor 3, University of the Philippines College of Medicine Director, UP Manila Interactive Learning Center Chief, University of the Philippines Medical Informatics Unit
  2. 2. NOTHING TO DISCLOSE I give consent for the audience to tweet this talk and give me feedback (@endocrine_witch). Feel free take pictures of my slides (though it will be on www.slideshare.net/isiptan).
  3. 3. … the average person with diabetes spends no more than 0.1% of their time in the course of an entire year discussing health matters with a medical professional. Hernandez M. Diabetes Manage. 2013;3(3):203-205 “
  4. 4. Social media & peer- to-peer healthcare Predicting user engagement YouTube as an information source
  5. 5. SOCIAL INTERACTION Symbolic, mutual exchange between two or more individuals, who possess a common or shared history, in which information is communicated both verbally and nonverbally Lewinski AA & Fisher EB. Chronic Illness 2016 Chronic Illness 12(2):116-144.
  6. 6. Forum, video conferencing, email, text chat NOT social media, but likely applicable
  7. 7. Lewinski AA & Fisher EB. Chronic Illness 2016 Chronic Illness 12(2):116-144. SYNCHRONOUS COMMUNICATION Health care professional led a discussion specific to T2D Peers could text chat each other for support and information
  8. 8. Lewinski AA & Fisher EB. Chronic Illness 2016 Chronic Illness 12(2):116-144. ASYNCHRONOUS COMMUNICATION Individuals do not have to be present online for an infinite amount of time to obtain information
  9. 9. www.fb.com/EndocrineWitch
  10. 10. Lewinski AA & Fisher EB. Chronic Illness 2016 Chronic Illness 12(2):116-144. The benefits of synchronous and asynchronous channels are limited by the activity level, and engagement, of the individuals participating.
  11. 11. THE ABILITY TO CONNECT WITH SIMILAR PEERS Lewinski AA & Fisher EB. Chronic Illness 2016 Chronic Illness 12(2):116-144.
  12. 12. Lewinski AA & Fisher EB. Chronic Illness 2016 Chronic Illness 12(2):116-144. Interactions are not constrained by geographical limitations.
  13. 13. PRESENCE OR ABSENCE OF A MODERATOR Lewinski AA & Fisher EB. Chronic Illness 2016 Chronic Illness 12(2):116-144.
  14. 14. Moderators are not a requirement for social interaction BUT … Lewinski AA & Fisher EB. Chronic Illness 2016 Chronic Illness 12(2):116-144.
  15. 15. Lewinski AA & Fisher EB. Chronic Illness 2016 Chronic Illness 12(2):116-144. Personalization of feedback regarding individual progress and self-management
  16. 16. Lewinski AA & Fisher EB. Chronic Illness 2016 Chronic Illness 12(2):116-144. The ability of individuals to maintain choice during participation
  17. 17. The lack of privacy limits choice when an individual wants to discuss personal matters.
  18. 18. Social media & peer- to-peer healthcare Predicting user engagement YouTube as an information source
  19. 19. PHILIPPINES CHINA KOREA MALAYSIA SINGAPORE TAIWAN AVERAGE % 0 25 50 75 100 USE OF FACEBOOK FOR HEALTH INFORMATION Pei-Li Teh & Marc Yates (2013) researchpartnership.com
  20. 20. Illness Representations, Coping, and Illness Outcomes in People with Cancer: A Systematic Review and Meta-Analysis: Systematic Review Illness Representations in Cancer - Scientific Figure on ResearchGate. Available from: https://www.researchgate.net/figure/ The-common-sense-model-of-self-regulation-of-health-and-illness-Leventhal-et-al-1980_fig1_305344696 [accessed 27 Dec, 2018] THE COMMON SENSE MODEL OF SELF-REGULATION AND ILLNESS
  21. 21. IDENTITY CAUSE TIMELINE CONSEQUENCES CONTROL CORE ATTRIBUTES OF ILLNESS REPRESENTATION illness label and associated symptoms how the condition came about acute, cyclical, or chronic nature of the illness potential social, physical, and other potential outcomes treatment options and one’s ability to influence illness progression Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689.
  22. 22. Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. ILLNESS COGNITION COMMON SENSE MODEL CONCEPTUAL linguistic, reasoned processes CONCRETE- EXPERIENTIAL imagery and perceptual memory processes
  23. 23. Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. NEGATIVE vs POSITIVE AFFECT Common Sense Model Social support as motivation to use health-related Facebook pages Content eliciting positive affect such as hope, humor, and happiness may reduce negative affect
  24. 24. Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. Content analysis of health communications posted on diabetes-related Facebook pages (n=10; 50 posts each) Coding categories: •illness representation information (identity, cause, consequence, control, and timeline), imagery •negative affect •positive affect •social support •positive identity •crowdsourcing •use of external links and videos
  25. 25. Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. HYPOTHESIS Illness representation, imagery, positive affect, social support and positive self- identity —> higher user engagement (likes, shares, comments) Negative affect will deter engagement
  26. 26. Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. Posts with imagery had 4.25 times more likes vs posts without imagery
  27. 27. Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. IMAGERY AND USER ENGAGEMENT LIKES
  28. 28. Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. SHARES
  29. 29. Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. ILLNESS REPRESENTATION ATTRIBUTES AND USER ENGAGEMENT Symptoms and timeline information did not predict user engagement Shared/liked more: control information Shared more: consequence information
  30. 30. Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. COMMENTS
  31. 31. Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. AFFECTIVE TONE AND USER ENGAGEMENT Positive affect did not predict higher engagement. Text-only messages with negative affect had relatively higher likes and comments.
  32. 32. Reach: 1.3M Engagements: 167,526
  33. 33. SOCIAL SUPPORT & POSITIVE IDENTITY AND USER ENGAGEMENT Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. Social support posts prompt comments Positive identity posts motivate users to share the message with others
  34. 34. CROWDSOURCING AS AN ENGAGEMENT STRATEGY Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. More comments but … Text-only messages soliciting user input were shared less frequently than those without solicitations Solicitations with illustrative images were shared more frequently relative to other messages with images
  35. 35. Rus HM & Cameron LD. Ann Behav Med 2016;50(5):678-689. EXTERNAL LINKS AS AN ENGAGEMENT STRATEGY 55% of posts had external links Had lower user engagement
  36. 36. Social media & peer- to-peer healthcare Predicting user engagement YouTube as an information source
  37. 37. Gimenez-Perez, Gabriel & Robert-Vila, Neus & Tomé-Guerreiro, Marta & Castells Fuste, Ignasi & Mauricio, Didac. Health Informatics Journal 2018. 146045821881363. 10.1177/1460458218813632. Are YouTube videos useful for patient self- education in type 2 diabetes? Search terms: “diabetes diet” and “diabetes treatment” n = 393 videos
  38. 38. Gimenez-Perez, Gabriel & Robert-Vila, Neus & Tomé-Guerreiro, Marta & Castells Fuste, Ignasi & Mauricio, Didac. Health Informatics Journal 2018. 146045821881363. 10.1177/1460458218813632. MISLEADING VIDEOS IF: Affirmed/insinuated curability Advocated for specific diets or treatments while implying other approaches invalid Provided pathophysiological explanations or treatment effects without evidence
  39. 39. YOUTUBE VIDEOS WITH MISLEADING INFORMATION Gimenez-Perez, Gabriel & Robert-Vila, Neus & Tomé-Guerreiro, Marta & Castells Fuste, Ignasi & Mauricio, Didac. Health Informatics Journal 2018. 146045821881363. 10.1177/1460458218813632.
  40. 40. INFORMATION IN VIDEOS PUBLISHED BY OR DISPLAYING HEALTH PROFESSIONALS
  41. 41. Gimenez-Perez, Gabriel & Robert-Vila, Neus & Tomé-Guerreiro, Marta & Castells Fuste, Ignasi & Mauricio, Didac. Health Informatics Journal 2018. 146045821881363. 10.1177/1460458218813632. Are YouTube videos useful for patient self- education in type 2 diabetes? Probability of videos with AADE7 is <50%; high odds of finding misleading information
  42. 42. Is YouTube Useful as a Source of Health Information for Adults With Type 2 Diabetes? A South Asian Perspective Leong AY et al. Can J Diabetes. 2018 Aug;42(4):395-403.e4 Search terms: Diabetes, Diabetes type 2, Diabetes South Asians, Diabetes Punjabi and Diabetes Hindi n = 71 videos
  43. 43. CLASSIFICATION OF VIDEOS Useful: scientifically sound information about type 2 diabetes Leong AY et al. Can J Diabetes. 2018 Aug;42(4):395-403.e4 Misleading: scientifically erroneous or unproven information Personal experience
  44. 44. Leong AY et al. Can J Diabetes. 2018 Aug;42(4):395-403.e4 VIDEOS REVIEWED Comprehensiveness Source of upload Technical/production quality Global quality scale (5-point Likert scale) Reliability (5-item questionnaire modified from DISCERN tool)
  45. 45. Is YouTube Useful as a Source of Health Information for Adults With Type 2 Diabetes? A South Asian Perspective Leong AY et al. Can J Diabetes. 2018 Aug;42(4):395-403.e4 45 (63%) useful videos vs 23 (32%) misleading videos Misleading videos were more popular than useful videos (233 vs 8.3 views/day)
  46. 46. @endocrine_witch

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