As influence increases, digital opinion leaders need ‘guidelines and guardrails’

PROVIDENCE, Rhode Island — The influence digital opinion leaders have on health care stakeholders and patients will continue to grow as new opportunities for education and collaboration arise, according to a presenter at the COSMO Meeting.

“Digital opinion leaders will continue to serve as a vital resource in public and medical communities,” Eleonora Teplinsky, MD, head of breast and gynecologic medical oncology at Valley Health System and clinical assistant professor of medicine at Icahn School of Medicine at Mount Sinai, said during a presentation. “However, we need guidelines and guardrails. We also need regulations that are going to help the public trust us and allow digital opinion leaders to do this without fear of liability.”

DOLs, KOLs and influencers

Teplinsky defined a digital opinion leader (DOL) as someone who influences the behavior or opinions of other heath stakeholders or their patients through digital activity. This is distinct from a key opinion leader, a person viewed as a more traditional expert in their field.

“About 20% of DOLs are also KOLs but it is hard to be both,” Teplinsky said. “KOLs are not sitting there making content for social media. More often, they’re writing the grants, doing the studies or making the podium presentation at meetings.”

DOLs are important because of their ability to reach a larger audience, Teplinsky said.

A person who presents from the podium at ASCO Annual Meeting can reach thousands of people; however, that content can reach hundreds of thousands of people if disseminated on social media, she said.

“If we want to get our message out, we need DOLs to amplify it. They have different followings, different reach and different engagement,” Teplinsky said. “When someone stands at the podium and talks about hazard ratios and P values, what does that mean to patients? DOLs are the ones who are going to take that data and translate it into something patients can understand, in a way that is relevant for them.”

DOLs — present on all social media platforms — are defined by influence, or number of followers; resonance, meaning the frequency with which their content is shared; and relevance of their content.

However, DOLs are distinct from influencers with medical qualifications in three key ways, Teplinsky said. They are not defined only by their number of followers; their influence is built on peer trust rather than celebrity status, and payment is not relevant.

Influencers frequently share sponsored content associated with brands, whereas DOLs place greater emphasis on education, Teplinsky said.

“A significant part of being a DOL is having an independent, unbiased voice online,” Teplinsky said.

‘Wild, wild west’

DOLs engage with a cross-section of stakeholders, including health care professionals, patients, advocates, pharmaceutical industry representatives, policy makers and regulatory bodies.

Teplinsky described the ethics of DOL engagement as “the wild, wild west.”

“No one has any idea what we should be doing,” she said. “That’s a big reason why many doctors are hesitant to get on patient-facing platforms, because there are no rules and there are concerns about liability, risk and compliance.”

DOLs can take steps to ensure compliance. They include staying up to date on institutional policies, protecting their professional image and reputation, and disclosing conflicts of interest and relationships. DOLs also must comply with the Sunshine Act and may be subject to regulatory oversight from CMS or FDA, Teplinsky said.

The most important step is to not provide medical advice or specific recommendations.

“You have to set boundaries because, if you do provide medical advice, you could be liable,” Teplinsky said.

Regarding brand partnerships or sponsored posts, FTC guidelines require influencers to disclose if they have been paid, received free products or have any other type of business relationship with a company they are promoting, Teplinsky said. Endorsements of medical treatments, products or services must include a disclosure to indicate a post is an advertisement or sponsored.

“But what are your responsibilities as a physician or health care provider?” Teplinsky said. “I think everyone has to draw their own line in the sand with this.”

Teplinsky said she has been approached about doing branded content for a drug but declined.

“If I promoted this drug, and then a patient comes into my office and I offer them that drug, they’re going to say, ‘Wait, I know you got paid by that company,’” Teplinsky said. “It’s a little different than consulting for a company, even though you’d disclose it the same way. Your public persona and what you do online is going to be seen very differently.”

She encouraged pharmaceutical companies that want to engage with DOLs to move away from branded content.

“Most people I’ve talked to don’t want to do branded content,” she said. “They want to do disease state education. I think that feels much more natural to a lot of us.”

Regulations are needed to address social media influencers who promote prescription drugs, Teplinsky said.

“Remember, these influencers are not always health care professionals, and they’re talking about drugs they got paid to talk about,” she said. “They don’t prescribe them and they don’t know what the side effects are. But health care professionals aren’t going to promote that content. This leaves a gap about who is promoting these prescription drugs.”

Authenticity, confidentiality and liability

The impact of DOLs ultimately comes down to authenticity, Teplinsky said.

“DOLs know their audience, they know what they want to know about, and they know how their community is going to react to something they post,” she said. “You can spend years cultivating your brand and one video can destroy it, so they are very protective of maintaining their authentic voice.”

DOLs must ensure they protect confidentiality and avoid sharing any identifiable patient information.

“You have to remember that patients are following you,” Teplinsky said. “If someone watching your video could identify themselves from it, you’ve violated HIPAA.”

DOLS should be mindful of copyright, trademark and patent protections and understand that institutional insurance policies most likely will not protect someone from the work they do online, Teplinsky said.

DOLs can be named in lawsuits, and social media posts are potentially discoverable, she said.

She urged DOLs to document patient consent, make sure they adhere to their institution’s policies and never violate HIPAA.

“It’s only going to get you in trouble,” she said. “It’s not worth the likes and retweets.”