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Building a Compliant Disease-Focused Community Through Social Media

For pharmaceutical companies, planning is key to activating a successful digital engagement campaign

By Katie Halper-Bogusky

Almost everyone is on some form of social media. If you want to reach any audience, Facebook, Twitter, Instagram, and other social media platforms are great ways to do it.

Marketers understand this and act on it. For pharmaceutical companies, however, this may be easier said than done. Research shows that more than 80 percent of American adults seek out information about medical conditions online, but there are constraints around the information pharmaceutical companies can provide when it comes to either disease awareness or product communications. Trying to do so in the unpredictable back and forth of social media dialogue is challenging, but it can be done. And, it can get great results.

While marketing and communications teams recognize the value of social media, the pharma company’s internal compliance team (or review committee) made up of legal, medical and regulatory experts, can’t just let them click “create.” The review committee is required to take a rigorous approach to reviews and anticipate issues to ensure everything complies with the guidance from the Food and Drug Administration (FDA).

The FDA’s role is to protect public health. To fulfill their obligation, the FDA must be alert to all public information related to medical products, devices, biologics and more – including what is shared on social media.

Facebook has more than 2 billion monthly users; Instagram, more than a billion. For businesses, social media represents the opportunity to establish brand authenticity and recognition on an immense scale. From a communications perspective, this is a way to effectively disseminate messages and reach target audiences. For pharmaceutical companies, however, this represents a billion risks.

Lesson 1

Being compliant takes time

The requirements for pharmaceutical-sponsored social programs are drastically different from consumer-facing brands.

Before any campaign or program can be launched, the review committee must ensure that information being shared is scientifically sound, adheres to internal policies and, most importantly, follows FDA guidance. Right now, there is no final social media guidance from the FDA; its draft guidance is currently used as best practices.

Company policies vary widely. Some have an appetite for risk that will allow for a more liberal moderation policy based on “rules of engagement.” Others are more risk-averse and want to document, in advance, every word that will be posted.  Either way, these materials can provide a foundation of compliance for your campaign:

  • Concept Review: Outlines the who, what, where, when, why and how of a program. This helps get the review committee comfortable with what you are proposing and allows them to remove anything non-compliant.
  • Moderators Guide: Details how the page will be monitored (i.e., how often it will be checked, response timing) and managed, and how you plan on responding to page visitors. This document demonstrates to the review team that you are familiar with its policies and know how to report adverse events1 and how/when to escalate issues. It also addresses the approach for private messaging.
  • Public-Facing Content: Every piece of content and accompanying imagery must go through the review committee. Content must be referenced, not make overstated claims and adhere to the guidelines outlined in the concept review (along with internal and FDA requirements).
  • Comment Log: Some companies may want a list of all comments on the page, meaning every comment must be logged in a database daily, which can be more than 50 comments a day.
  • Rules of Engagement: Establish a level of transparency between page moderators and page visitors. The Rules clearly outline the goals of the page, expectations of page visitors and consequences for not abiding by what is outlined (i.e., a page visitor leaves a profane comment, we reserve the right to keep it hidden).

Takeaway: If you’re working against a timeline, build in more time than you think you’ll need for your reviews. For each material, reviews can take anywhere from two weeks to two months, and that doesn’t account for your development time. While you can’t anticipate every situation, it is important to think critically and strategically to prepare for what you can.

Bonus Lesson: Banned Word List and Comment and Response Guide

There are somethings no one wants to see on a page dedicated to disease awareness (curse words, vulgar comments, false claims, etc.), creating a Banned Word List automatically hides comments that contain these types of words. Before the comments can be posted, they must be reviewed by the page administrator.

A Comment and Response Guide contains approved responses to users’ comments. A comprehensive guide details what type of post requires a response and what action to take (e.g., post a comment, hide a comment, respond, block user, report an adverse event, etc.). Responding to comments is an important way to optimize page engagement, however once responses are approved, they cannot be altered. If you see a conversation start to head in a particular direction, the approved responses might not be suitable. If that’s the case, the guide may require frequent updates to stay on top of conversations and interests. 

Lesson 2

Stay on top of it

The pharmaceutical industry has less flexibility than other industries when it comes to sharing, posting, managing and moderating social media channels. Every action taken on the page needs to be addressed as close to real-time as possible. While constantly keeping an eye on a social media page is time-consuming, it is mandatory, which is why setting up a strong and streamlined moderation schedule is important. Consider:

  • Checking the page 3-4 times a day (shifts).
  • Setting aside time to read through all comments closely and with a critical eye (depending on the volume of comments, this may take a while). When doing this, you’ll need to:
    • Ensure no misleading or inaccurate information has been shared.
    • Respond to comments as needed with review team approved responses.
    • Know what comments require a private message response.
  • Logging the comments into the database (if required) each shift.
  • Getting familiar with the process for reporting adverse events.

Moderating is a key component of any social media program. When wrong or misleading information is posted to the page, it’s not just a problem for the page visitors but for the company since they can only share information that is scientifically sound. Given this, if moderation isn’t built into the program, it’s unlikely to get approved.

Lesson 3

Listen and engage authentically

You’re prepared for questions related to the campaign and its purpose, about the disease and from individuals confused by the information being shared, but maybe you’ve overlooked that people want to share personal experiences regarding the disease, that they have lost loved ones or that they are struggling themselves.  

When you look through an overwhelming number of comments every day, the human behind a comment can be overlooked. If you take the time during moderation to recognize what the community is sharing, it takes the responsibility to a different level. Moderating means becoming a part of the community you’ve developed. Facilitating a dialogue virtually among strangers is nothing like a face-to-face conversation, and showing compassion through a Facebook comment isn’t easy.

I watched my husband struggle with the disease for years. His condition worsened to the point where he wasn’t able to get out of bed. I miss him every day. It’s hard to carry on without him.

A “thank you for sharing your experience/question,” response isn’t empathetic. People gravitate to  connections, and we’ve seen these connections grow on social platforms — people offering, support, sympathy and understanding. It’s important that moderator responses don’t feel automated or insensitive. Being attentive to these comments and responding appropriately shows that there is a person who listens behind the page. By engaging authentically, you can gain insight into audience perspective and pain points, as well as the resources they need.

At times, especially in the beginning, paid or sponsored content can attract your target audiences to your page. Engaging with other groups with a similar focus, such as advocacy organizations, is also a great way to engage more people who might be interested in disease-specific education. From there, the page following is more likely to grow organically.

The Main Lesson

Invest in learning

The potential for a successful disease awareness, pharma-compliant and review committee-approved social media program is entirely possible if you are willing to invest – not just financial resources but also time, patience and mental stamina.

Even if a multitude of situations are anticipated, including all the foreseeable comments or questions that can be posted on your social channel, brace yourself for the unexpected. Managing a pharmaceutical-compliant social media platform requires learning on the job, adjusting quickly and putting yourself in the shoes of not just regulatory authorities but the people you are trying to help educate.

There is something to be said for witnessing conversations and connectivity among individuals and seeing a community come to life. As page followers begin to share their experiences and find out they’re not alone, you can take your hands off the keyboard and watch your social media efforts pay off. Experiences are being shared, but so is information, which can help inform discussions both virtually and face-to-face, and give you an understanding of how to best move forward with your communications efforts.

  1. Adverse Event: an unexpected medical problem that happens during treatment with a drug or other therapy. Adverse events may be mild, moderate, or severe, and may be caused by something other than the drug or therapy being given. Also called an adverse effect. (“NCI Dictionary of Cancer Terms.” National Cancer Institute, www.cancer.gov/publications/dictionaries/cancer-terms/def/adverse-event.)

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