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.


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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
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# Addiction # Consumer_Behavior # Illegal_Drugs
o Science_&_Society
# Public_Health # Scientific_Conduct # Privacy_Issues
* RELATED_TERMS
o Communication o Psychopathology o Mass_media o
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========================================================================== 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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