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
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.
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
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.
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
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.
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.
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
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
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
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
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
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
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
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
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
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.
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
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