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Social Media in Clinical Practice for AIBD 2020

76b8d066c4a1b9b6624abbf1544ed7ba?s=47 Peter Higgins
November 25, 2020

Social Media in Clinical Practice for AIBD 2020

Slides for a Panel Discussion of Social Media in Clinical Practice at the Advances in IBD 2020 Virtual Meeting with Panelists
Brennan Spiegel
Aline Charabaty
Neilanjan Nandi


Peter Higgins

November 25, 2020


  1. Social Media in Clinical Practice Peter DR Higgins, MD, PhD,

    MSc Brennan Spiegel, MD, MSHS Aline Charabaty, MD Neilanjan Nandi, MD @ibddoctor – livetweeting slides @BrennanSpiegel @DCharabaty @fitwitmd Download slides at: https://speakerdeck.com/higgi13425
  2. Agenda • Why Use Social Media in IBD Practice •

    Pick Your Audience • Which Platform(s) to choose • Set Your Goals • Lurking Mode vs Posting Content • Create and Highlight Quality Content • Live vs Durable, or both? • Structured Events • Problems in the Virtual World
  3. Why Use Social Media? It’s Where People Are US platforms

    (monthly use) 73% use YouTube 69% Facebook 37% Instagram 28% Pinterest 27% LinkedIn 22% Twitter 24% Snapchat
  4. Different Platforms have Different Audiences • Teens/pediatrics • Snapchat •

    TikTok • 20-somethings • YouTube • Twitter • Instagram/Pinterest • 30-somethings • Facebook • LinkedIn Each platform has its own culture and norms. On TikTok, you are expected to be concise, entertaining, and demonstrate some boss dance moves. LinkedIn is more buttoned down.
  5. Panelists Which SoMe platform(s) do you use professionally? Why did

    you choose this/these? Do you reach different audiences on different platforms?
  6. Paper Patient Ed → YouTube → Twitter • Started with

    a patient education binder • Moved to PDF on the web, still low engagement • Started making short YouTube videos (IBD School) • Now 70+ videos, > 500K views in >100 countries • Tried Twitter to share links to Videos • Found a lot of misinformation on #IBD • Found a number of #IBD patient Advocates
  7. IBD Patient Advocates • Frequently battling misinformation • Sharing advice

    on insurance appeals • Advocating for quality information Inflammatory Bowel Disease Patient Leaders' Responsibility for Disseminating Health Information Online Gastroenterol Nurs Jan/Feb 2019;42(1):29-40.
  8. Goals for Social Media Use • Build your Practice (profits?)

    • Build your Personal Brand • Combat Misinformation • Provide quality information • Learn about/Discuss IBD
  9. Can Social Media Help Build a Practice? • Plastic surgeons

    report that social media marketing increases patient volume. • People seeking out plastic surgery are more likely to be active on Instagram and Snapchat • Patients report great interest in before and after pictures • Surgeons report small gains in patient volume (1-10%) • Not well documented – by survey and self-report • Not clear if Plastic Surgery experience generalizes to GI or to IBD Sorice, S, et al. Plastic and Reconstructive Surgery: 2017;140:1047-1056
  10. Can Social Media Help Build a Personal Brand? • Anyone

    can claim to be an IBD expert on the internet • Many people use the internet (especially YouTube) to sell products / “cures” • The most viewed IBD-related videos on YT are • Sharing anecdotes about miracle cures • Selling a supplement or other product • Mukewar re YouTube: “Healthcare providers and professional societies should provide more educational materials using this powerful Internet tool to counteract the misleading information” Mukewar, S, et al. J Crohns Colitis 2013 Jun;7(5):392-402.
  11. How Do Patients Interpret & Share IBD Info? • 50%

    of patients felt they could not distinguish high-quality from low-quality IBD information online • 32% of patients used social media at least once in the last week to obtain or post IBD-related content. • Increased use associated with younger age, female gender, active disease, and Crohn’s dx • Increased social media use was associated with lower levels of IBD knowledge • Participants who most frequently produced social media content were less knowledgeable about IBD Reich, J, et al. Inflamm Bowel Dis 2019 Feb 21;25(3):587-591. Groshek, J, et al. d Internet Res 2017 Dec 8;19(12):e403.
  12. Can the Internet Be a Big IBD Case Conference? •

    Potential to access global expertise • Opportunity to poll a (biased) sample for the “wisdom of the crowd” • Within the limitations of HIPAA and GPRD, can discuss difficult cases with others and get free advice IBD Case Conference at Weill Cornell
  13. Panelists What led you to engage professionally on Social Media?

    What were your initial goals? How have your goals for Social Media changed over time?
  14. Moving from Social Media Consumer to Content Producer • Every

    platform has its norms and expectations • There is often specific (and sometimes obscure) jargon • #FF, AFAIK, DM, IMO, RT, ratio (Twitter) • Extra, tea, snatched, flex, stan (TikTok) • #L4L, #POTD, #OOTD, #TBT, #SMH, #YOLO, Regram (Instagram) • It can take a while to learn the culture of a platform • Most people start out in ‘lurking mode’ – and many stay there. • Follow others, read their posts • Maybe reply • Rarely post their own content
  15. Panelists What was your Social Media platform learning curve like?

    When did you decide to start posting content? When did you develop a content strategy (if you have one), and what is your strategy now?
  16. Social Media Can Harm Patients • While the idea of

    Social Media as a Virtual Support Group sounds like a good thing, the reality is often different • Unwanted confrontation • With possible negative future • With other patients doing much better • Unwanted pity, stigma, advice on how to cure/treat IBD • Anxiety-provoking accounts of – • Competitive illness – I have more complications, more surgeries, etc. • Feel like everyone on SoMe is asking about their IBD when trying to focus on normal life • Often have a hard time identifying quality information sources • Can be overwhelming Palant and Himmel, BMJ Open, 2019;9:e022642. doi: 10.1136/bmjopen-2018-022642
  17. Patient-Facing Posting • Addressing shared misinformation about #IBD • Calmly

    point out the facts, provide references (link to source) • Use link (URL) shorteners: https://goo.gl/ • To help fit into 280 characters • Answering legitimate questions • Is fecal calprotectin experimental? Should insurance cover it? • Can one person have both UC and Crohn’s at the same time? • Why can’t my doctor figure out what kind of IBD I have? • Boosting Quality Information from #IBDadvocates
  18. Sharing Educational Materials 3,585 impressions

  19. MDs: Sharing Research Trans-Atlantically DDW ACG AIBD CCF ECCO UEGW

  20. Creating Quality Content • Easy: Curate and Share / retweet

    quality content • Quote and Comment • Live Tweet a Conference • Highlights of interesting presentations • Comment on presentation, raise questions • Highlight an Interesting paper • Include a visual • Include a link to paper (preferably not behind a firewall) – frustrating for followers
  21. Creating Quality Content • Next level: Original posts • Share

    a helpful fact • Add images or gifs • Put a fun spin on it (if possible)
  22. Images Help

  23. Panelists How do you create original posts? Do you plan

    and schedule posts (TweetDeck, etc.), or fire off posts when the idea hits you? What types of posts work best for you?
  24. Beyond a Single Post • Extended forms of Posting •

    Tweet Threads • Multiple linked posts • Blogs • Longer form for more nuanced discussion
  25. Beyond a Single Post • Structured Live Events • Tweetups

    – regularly scheduled content on a focused topic • @MondayNightIBD • @ScopingSundays • Facebook Live Events • Virtual Patient Education Conferences • GoToWebinar • Crowdcast, others
  26. Beyond a Single Post • Durable Educational Material • YouTube

    videos • Can watch, rewind, re-watch during the teachable moment • Posted Podcasts • AGA University, ACG Education Universe Videos • Often offer CME for members
  27. Panelists Have you used Threads or a Blog? When are

    these helpful? What goes into planning and executing Live SoMe events? Have you posted long-form durable materials? How are Live and Long-form durable materials different from posts/threads?
  28. Staying Focused vs. Authenticity • Should your account “stay in

    one lane” (IBD)? • Or share some of real life (authenticity)? • How do you decide?
  29. Stepping Out of the IBD Lane • Meena Bewtra @DrsMeena

    is vigorously politically active, especially on health-care adjacent issues • This is a big part of who she is, and part of her Twitter identity • Many docs are being vocal about COVID and actively debunking misinformation on Social Media
  30. Health Advocacy • Railing against insurers • Surveying patients about

    insurance • Highlighting changes in health care that affect patients with chronic diseases • Some risk • Avoid making it personal or specifically political • But OK to be a passionate advocate for your patients
  31. Stepping Out of the IBD Lane • Alan Moss @moss_md

    is more likely to post outdoor adventure pics
  32. Panelists Do you strictly stay in the GI/IBD lane on

    your professional Social media accounts? What off-topic content do you share (if any), and why? Do you ever touch “political” topics? How do you approach this?
  33. Promoting Your Academic Work • Mixed data on the effects

    of Social Media posts on downloads and citations • No measurable effect in Public Health • Altmetric score is increased in Rheumatology & later citations • Weak association (r = 0.32) between Altmetric score and citations in Neurology • Significant increase in citations and Altmetric score in Surgery after Visual Abstract shared on Social Media https://ard.bmj.com/content/79/Suppl_1/208, JAMA Neurol. 2019;76(9):1122-1124. Ibrahim, A, et al, Ann Surg. Apr 2017, https://boris.unibe.ch/92308/8/Tonia%20IntJPublicHealth%202016_manuscript.pdf
  34. Sharing Your Academic Work • You can share your slides

    before/during a presentation with scheduled tweets of the key slides (TweetDeck to schedule in advance) https://tweetdeck.twitter.com • You can share your whole slide deck with SpeakerDeck • https://speakerdeck.com • Announce this at the beginning of your talk • No one has to take blurry pictures • Everyone can retweet quality images • Everyone has access to the slide deck. 530 post-talk views
  35. Panelists Do you share / promote your academic work on

    Social Media? Do you share slides during talks? or whole talks / slide decks? Why or Why not? Have you experienced backlash to promotion of new findings on Social Media?
  36. Adverse Events in Social Media • Controversial topics • Be

    careful / avoid specific politics, politicians • Be careful around CAM – attracts devotees, people who sell stuff • Be careful around MJ – attracts monied & incentivized devotees, threats • Think twice, post once (deleted posts can always be found) • There is really no rush. • You can post it later. • If you are not sure, don’t.
  37. Adverse Events in Social Media • Avoid discussing “the amazing

    case I saw today” • VERY easy to violate HIPAA Well meaning posts But LOTS of identifying details These tweets uniquely identify a patient at a particular hospital with a craniectomy who got an LP on November 13
  38. General Advice • Never take pictures in or near a

    patient space • Patient rooms • Clinic rooms • Endoscopy suite • Operating room • Infamous post from a colorectal surgeon at a large Midwestern clinic • Selfie of surgeon and 1st assistant in OR at happy conclusion of a difficult case • Patient visible in background on operating table • Still in stirrups with pelvis exposed • Rapid backlash – post taken down within 12 hours • Always check background of pictures before posting
  39. General Advice • Avoid specific details about cases • It

    feels like Grand Rounds, but it is in public • Know the 18 elements of PHI • Think hard about whether you (and freely available internet data) have provided enough details to identify the patient
  40. Panelists What are notable mis-steps you have seen in medical

    Social Media? What advice do you give to trainees about engaging in Social Media?
  41. Questions for the Panelists? Neilanjan Nandi, MD Aline Charabaty, MD

    Brennan Spiegel, MD, MSHS