MSGID: 1:317/3 640ff86a   
   PID: hpt/lnx 1.9.0-cur 2019-01-08   
   TID: hpt/lnx 1.9.0-cur 2019-01-08   
    Study sheds light on concerning new trend in drug advertising: Patient   
   influencers    
      
     Date:   
         March 13, 2023   
     Source:   
         University of Colorado at Boulder   
     Summary:   
         Pharmaceutical companies are increasingly partnering with real   
         patients, or patient influencers, who share their experiences and   
         advice on social media. A new study offers a first glimpse at why   
         and how they do it.   
      
      
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   FULL STORY   
   ==========================================================================   
   Patients-turned-social-media-influencers routinely offer prescription drug   
   advice to their followers and often have close ties with pharmaceutical   
   companies, according to new University of Colorado Boulder research.   
      
      
   ==========================================================================   
   But they also tend to have good intentions, the study found.   
      
   The study, published this week in the Journal of Medical Internet   
   Research, provides some of the first insights into the burgeoning,   
   loosely regulated world of so-called "patient influencers," sharing   
   findings from 26 in-depth interviews about why and how they do it.   
      
   "The bottom line here is that patient influencers act as a form of   
   interactive direct-to-consumer (DTC) advertising, sharing their knowledge   
   and experiences on pharmaceutical drugs with communities of followers in   
   which they wield great influence," said author Erin Willis, an associate   
   professor of advertising, public relations and media design. "This raises   
   ethical questions that need more investigation."  The study comes amid   
   growing concerns about the harmful consequences of drug promotion on   
   social media.   
      
   In recent weeks, in the wake of a slew of TikTok videos and Twitter   
   posts touting the weight loss benefits of the diabetes drug Ozempic,   
   patients who need the medication to manage their disease have faced   
   global shortages.   
      
   Meanwhile, those taking it "off-label" to slim down have experienced   
   surprising side-effects, including violent diarrhea and extreme facial   
   thinning.   
      
   "This is a great example of the power of social media and the unintended   
   consequences," said Willis.   
      
   A new kind of advertising Controversial from its start in the 1980s,   
   and still only available in the United States and New Zealand, DTC   
   advertising enables drug companies to target consumers directly, rather   
   than exclusively through physicians. About half of the people who ask   
   their doctor about a drug after seeing a TV ad get it.   
      
   With trust in pharmaceutical companies and traditional media declining,   
   drug makers are now turning to real patients as messengers, with companies   
   like Health Union connecting them for partnerships.   
      
   Willis conducted one-on-one, hour-long Zoom interviews with   
   influencers with a range of conditions, including lupus, fibromyalgia,   
   Parkinson's disease, asthma, HIV, celiac disease, chronic migraines and   
   perimenopause. Eighteen of the 26 collaborated with a pharmaceutical   
   company in some way.   
      
   Most had between 1,000 and 40,000 followers. Such "micro influencers" tend   
   to be less expensive for advertisers to work with than celebrities, and   
   research has shown they have the most influence on purchasing behaviors,   
   said Willis.   
      
   Some interviewees posted company press releases directly. Others read   
   studies about drugs and translated results for followers. Some were paid   
   to post content for drug companies.   
      
   "Health literacy and digital literacy are both concerningly low in this   
   country," said Willis, noting that consumers often fail to recognize the   
   difference between a sponsored ad and an altruistic personal post. "The   
   fact that patients with no medical training are broadly sharing drug   
   information should alarm us."  Good intentions On the positive side,   
   Willis was heartened by the reasons participants become influencers.   
      
   Almost all said they were drawn to their roles by a sense that the   
   answers they sought as patients, didn't exist in other channels.   
      
   "I spent a lot of time looking for diabetes information that related   
   to me - - an African American woman from the South," reported one study   
   participant. "I didn't see what I needed, so I created it."  Others were   
   motivated by a wish to destigmatize disability in certain communities.   
      
   "There's still not a lot of talk about Latinos and HIV," said another   
   participant. "When there was information, it wasn't culturally   
   appropriate."  Five said they never share information about drugs,   
   stating that they believed it was "borderline unethical."  Others said   
   they would only post about drugs they personally had been prescribed and   
   taken and always encouraged followers to consult with their doctor. They   
   all said they generally strived to behave ethically.   
      
   "It's comforting that the people we interviewed generally want to stay   
   abreast of the science and be a credible source," said Willis. "But I also   
   know that doctors go to medical school for a reason."  Concerns abound   
   Several influencers reported that followers frequently private message   
   them to get detailed information about dosage and side effects.   
      
   "In an online community, there are other people there to say, 'That's not   
   true or that's not what I experienced.'" Willis said. "But with social   
   media, a lot of the conversation happens privately."  Willis also worries   
   that influencers may stress the upsides of medications without fully   
   disclosing the side-effects. For instance, she references a famously   
   controversial 2015 post by celebrity influencer Kim Kardashian, singing   
   the praises of a "#morningsickness" drug called Diclegis to her tens of   
   millions of followers on Instagram.   
      
   The Food and Drug Administration swiftly flagged the post for omitting   
   the drug's long list of risks, required Kardashian to remove the post and   
   dinged the drug maker with a warning letter. The Federal Trade Commission   
   (FTC) now requires influencers to disclose whether they are paid via   
   hashtags, such as #ad or #sponcon, and the Food and Drug Administration   
   has rules on what can be said on social posts. But those rules are open   
   to interpretation, and videos, disappearing content and direct messaging   
   can be tough to track.   
      
   Willis acknowledged that her sample was a small one and that because many   
   of her interviewees were referred to her by Health Union, they likely skew   
   to the responsible side. In future studies, she intends to include broader   
   sample sizes, explore how influencers impact treatment decisions and   
   investigate compensation for and regulations around patient influencers.   
      
   Analysts predict the influencer marketing industry as a whole will be   
   valued at $21.1 billion in 2023.   
      
   As patient influencers increasingly find their place in it, Willis   
   contends that regulators should work harder to keep up with all the   
   new platforms.   
      
   "This is happening, with or without regulation, and people should be   
   aware of it," Willis said.   
      
       * RELATED_TOPICS   
             o Health_&_Medicine   
                   # Pharmacology # Pharmaceuticals # Today's_Healthcare   
             o Mind_&_Brain   
                   # Addiction # Consumer_Behavior # Illegal_Drugs   
             o Science_&_Society   
                   # Public_Health # Scientific_Conduct # Privacy_Issues   
       * RELATED_TERMS   
             o Communication o Psychopathology o Mass_media o   
             Social_psychology o Social_cognition o Social_science o   
             Post-traumatic_stress_disorder o Cognitive_neuroscience   
      
   ==========================================================================   
   Story Source: Materials provided by   
   University_of_Colorado_at_Boulder. Original written by Lisa   
   Marshall. Note: Content may be edited for style and length.   
      
      
   ==========================================================================   
   Journal Reference:   
      1. Erin Willis, Kate Friedel, Mark Heisten, Melissa Pickett, Amrita   
         Bhowmick. Communicating Health Literacy on Prescription   
         Medications on Social Media: In-depth Interviews With "Patient   
         Influencers". Journal of Medical Internet Research, 2023; 25:   
         e41867 DOI: 10.2196/41867   
   ==========================================================================   
      
   Link to news story:   
   https://www.sciencedaily.com/releases/2023/03/230313215101.htm   
      
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