Listening to Consumers 101, How Marketers Can Leverage Consumer-Generated Media

Listening to Consumers in a Highly Regulated Environment How Pharmaceutical Manufacturers Can Leverage Consumer-Generated Media Melissa Davies Research Director, Healthcare Nielsen Online August 2008

Listening to Consumers in a Highly Regulated Environment Table of Contents Market Context ........................................................ 1 The Challenges of Listening.................................. 2 Sidebar: Adverse Event Reporting .................................. 2 The Benefits of Listening ....................................... 4 Case Study: CGM Provides an Early Alert ........................... 4 Getting Started ........................................................ 5 About Nielsen Online Nielsen Online, a service of The Nielsen Company, delivers comprehensive, independent measurement and analysis of online audiences, advertising, video, consumer-generated media, word of mouth, commerce and consumer behavior, and includes products previously marketed under the Nielsen//NetRatings and Nielsen BuzzMetrics brands. With high quality, technology-driven products and services, Nielsen Online enables clients to make informed business decisions regarding their Internet, digital and marketing strategies. For more information, please visit www.nielsen-online.com. This whitepaper is provided by The Nielsen Company for informational purposes only and is not intended and should not be construed as regulatory or legal advice. Readers should consult with and obtain the advice of their company’s marketing, regulatory and legal departments before taking any actions of significance relating to the subject matter herein.

Market Context: The Empowered Consumer The roles of consumers and corporations have changed significantly since the rise of the Internet. YouTube is only the latest manifestation of a broader trend: consumers have the ability to voice opinions about products and brands, and there is now little standing in their way. Consumers have come to expect that treatments with other patients—and this companies can and should listen to is a number that can only grow, given the their ideas, requests and questions, size of the online population today and and that companies will react to this the increasing number of social media input. A broad range of traditional sites just a few clicks away. companies—including Purina, Mattel, American Airlines and Comcast, to name Why is social media such a strong Companies today face an increasingly just a few—have quickly learned the resource for patients and caregivers? difficult challenge: how to communicate importance of listening and responding The anonymity of the Internet affords a with consumers in a way that encourages to what their consumers are saying. comfort level that encourages individuals trust and engagement, in an environment Companies are being held to increasingly to share details about their symptoms, where companies’ statements and actions high standards set by organizations that treatment history, experiences with their are routinely dissected on the Internet for excel at listening and responding, such doctors, the efficacy and side effects of the entire world to see. Pharmaceutical as Zappos, Geico, Starbucks, Southwest medication, the impact of their condition companies (so far) have escaped the Airlines and others. These companies are on their own lives and more. At the most public of lashings; however, patients setting the bar not just for their direct same time, the ubiquity of the Internet are taking an increasingly proactive role competitors, but for all businesses that can provide a connection between as healthcare consumers, meaning that serve consumers. experienced patients and someone newly pharmaceutical marketers and brand diagnosed. That is a powerful draw for managers now must navigate new and Consumers who feel they are not being anyone new to a particular disease and unfamiliar waters. What can pharma heard will turn to other channels to unsure about what the future holds. companies do to change this dynamic share their opinions and express their Finding a community of individuals and open a door of communication with frustration. Many choose the Internet— who have a shared experience is equally today’s empowered consumer? The and specifically social media sites powerful for veteran patients, who return answer to this question is complicated including discussion boards, blogs and to online discussion again and again to by the heavy regulation around the online groups. Specific to healthcare, a seek and share emotional support as they healthcare industry, but one thing is clear: Pew Foundation study finds that 39% continue on the path of treatment and pharmaceutical manufacturers have a lot of patients already use online support living with their condition. to gain by listening to the conversation groups to discuss medications or that is already taking place. 1 Listening to Consumers in a Highly Regulated Environment

The Challenges of Listening There can be no doubt that creating a listening culture presents a challenge for many Social Media and companies, including pharma- Adverse Event Reporting ceuticals. In certain corners Any pharmaceutical company considering an entry into the social media space of corporate America, a will naturally wonder about discussion of adverse events. Are consumers sharing “listening as liability” mindset information online that would indicate an adverse experience? Does social media has prevailed. monitoring trigger the AE reporting requirement? Many companies are intimidated by the At this writing, there is no FDA guideline or regulation that specifically covers procedures that must be put in place the content of online discussion in a way that is different from reporting for logging consumer feedback, seeing AE information derived from any other source. Current FDA guidelines give that it gets to the right place and, most four parameters for submitting information about adverse experiences: the importantly, following through. pharmaceutical company should have knowledge of (i) an identifiable patient; (ii) an identifiable reporter; (iii) a specific drug or biologic involved in the event; More than possibly any other industry, and (iv) an adverse event or fatal outcome. (From FDA’s “Guidance for Industry: the pharmaceutical industry is Postmarketing Adverse Experience Reporting for Human Drug and Licensed constrained in how it communicates Biological Products: Clarification of What to Report,” issued August 1997; with its customers—exemplified available online at: http://www.fda.gov/cder/guidance/1830fn1.pdf.) According by the advertising real estate that to the guideline: “If any of these basic elements remain unknown after being pharmaceutical companies must actively sought by the applicant, manufacturer, or licensed manufacturer, a allocate to side effects and possible report on the incident should not be submitted to the FDA because reports adverse events (AEs) associated without such information make interpretation of their significance difficult, at with their products. It is completely best, and impossible, in most instances” (emphasis added). A draft guideline for understandable that the constraints filing individual case safety reports related to OTC treatments was posted on the around pharmaceutical companies’ ability FDA website in October 2007; it reiterates these same four parameters and again to speak to their customers would affect states that the responsible person should “wait to submit a report on the incident how they listen to their customers. We to the FDA until the information is obtained.” believe, however, that the two do not This raises a key question: When adverse experiences are mentioned within need to go hand in hand; that there are consumer-generated media (CGM), do they meet the FDA’s criteria for reporting? ample opportunities for pharmaceutical manufacturers to listen to their In a recent Nielsen analysis of 500 healthcare-related messages posted online customers, and to better serve the public across multiple disease categories, Nielsen’s BuzzMetrics analysts found only and gain competitive advantage by (continued) doing so. 2 Listening to Consumers in a Highly Regulated Environment

one message that incorporated the information needed to meet all four of the FDA’s AE reporting requirements (see chart for details). In this message, a caregiver whose mother was taking chemotherapy reported that her mother experienced abdominal fluid retention, noted that this was not a listed side effect of the medication, and inquired in the online community whether this fluid retention might be a sign that the medication was working. A A note on identifiable reporters: Though the FDA guideline B E does not specify what constitutes an identifiable reporter, the F 2007 draft guideline for OTC reporting notes that in order for an D AE report to be submitted to the FDA, there should be “sufficient information for the responsible person to follow-up, such as a C phone number or e-mail address.” Most online discussion communities discourage the use of personally identifiable information. This is especially true within healthcare communities, where personal privacy is even more carefully guarded. For example, WebMD’s Terms and Conditions of Use include the following: “To protect your privacy, you agree A 494 messages mention an identifiable patient that you will not submit any media that contains Personally B 100 messages mention a specific medication Identifiable Information (like name, phone number, e-mail address or web site URL) of you or of anyone else.” Other C 56 messages mention an identifiable reporter websites use similar language to caution participants against 14 messages mention both a specific medication and an D revealing personal information. identifiable reporter 4 messages mention an adverse experience and include an E In the recent analysis of 500 messages, Nielsen’s BuzzMetrics identifiable patient and a specific medication analysts found that 56 messages (11%) contained identifying F 1 message also includes an identifiable reporter information that could be used to reach out to an individual to follow up on a possible AE report. It is important to note that all Among 500 messages analyzed, one message of these messages came from Yahoo! or Google groups, rather incorporated all four AE reporting criteria than from discussion boards. Groups use their members’ e-mail addresses as their online identification; this is a key difference from discussion boards, which use less identifiable screen names It is clear that a pharmaceutical company that aggressively for members’ online ID. This use of e-mail addresses provides monitors social media may pick up the occasional AE within contact information that could be used to follow up with patient/caregiver online discussion. Nielsen Online’s experience a reporter to gather the details that would be needed for is that this happens very rarely, with a volume that is entirely an AE report. manageable within companies' broader AE monitoring programs. 3 Listening to Consumers in a Highly Regulated Environment

The Benefits of Listening Following are just a few examples of consumer conversations that are taking the learning opportunities social media place naturally in the online environment Case Study research presents: allows researchers to avoid respondent A few months after the launch of bias by studying the full scope of a new prescription that used an Understand patients’ questions consumer feedback—the good, the bad innovative administration mechanism, Patients who are new to a medication and the ugly. This can be a humbling expe- patients began reporting difficulties often have questions about how and rience and in some cases brand managers that were related to its adhesive when to take it. In many cases, these will need to brace themselves for what application mechanism but not to the questions may not occur to the patient they will learn. However, many market- medication itself. The first accounts of during the initial doctor visit. Patients ers believe that a proactive approach to these experiences surfaced in online often turn to the experiences of others learning about issues being discussed is discussion forums four months before within the online community for preferrable to reacting to an issue already another media outlet picked up the answers. Understanding the questions snowballing within consumer discussion. story, and nine months before a that typically come up can inform the major national media outlet reported language used in brand packaging Expand the feedback base on it. When the Institute for Safe inserts, patient education materials, The sheer number of patients and Medication Practices (ISMP) reported Web site content, DTC marketing and caregivers who are participating in online on these difficulties, it cited messages even conversations between sales reps discussion creates an opportunity to posted by patients and caregivers and doctors. collect data from a much larger sample from “several online message boards” than is often possible through survey or Learn about patients’ experiences in its alert. focus group research. using the product Is the packaging hard to open? Does Answer questions the brand team From the very first consumer- the patch fail to peel away from the didn’t think to ask generated messages on this issue, protective backing—or fall off too easily Even the best survey instruments cannot patients and caregivers shared details after it is applied? Is the eye dropper too uncover the answers to unasked questions. about their experiences, as well as short to get the last dose of medication But if consumers are talking about issues tips and potential solutions for ways out of the bottle? This type of feedback outside of what is expected, listening to to work around the application can quickly bubble to the surface within their online discussion is a great way to difficulty, such as putting the online discussion. learn about the topics that are driving medication in the freezer briefly to that conversation. Having this knowledge make it easier to apply. Ultimately, Avoid response bias can inform brand strategy or help shape the pharmaceutical company A challenge of market research is traditional market research efforts to marketing the medication was able overcoming respondent bias. Following further explore these consumer issues. to go back to its manufacturing partner and work to resolve the issue. 4 Listening to Consumers in a Highly Regulated Environment

Getting Started For companies ready to take a more Conduct an online search on the brand. active role in the process of listening to Start by scrolling through the first 20 or consumers, but not sure where or how to 30 search results. How many of these are start, the following steps can provide a written by consumers? (The answer may roadmap to leveraging the digital space: surprise you.) Marketers reviewing online search results should note that these are Listen to the conversation the very same search results that patients This advice may seem obvious, but and caregivers will find if they search the for companies wondering how to same terms. take advantage of the rich learning opportunities in social media, this is the Visit Wikipedia and see what best place to start. There are many ways information has been posted about to approach this important first step: the brand. Hint: Wikipedia entries typically include both an “article,” which Those who are ready for a more Head online to a discussion board and is often more reference-based, as well broad-ranging analysis (or simply do start reading. Marketers could easily as “discussion” that usually incorporates not have time to monitor the discussion start with any of the large health sites— consumers’ input. Brand managers will themselves) may want to consider WebMD, Revolution Health, iVillage, want to be sure to read both. enlisting a third-party service, such as Healthboards.com, etc. Most discussion Nielsen Online, to provide this information. sites are organized into smaller forums Check for consumer-created videos by disease category, allowing patients about the brand. From serious how- Facilitate the conversation and caregivers to congregate into affinity to videos to personal stories and For companies comfortable listening to groups—making it easy for pharma testimonials to spoofs on anything the conversation, a next step to consider managers to find relevant discussion from marketing to side effects, many is helping to build the community too. Those concerned about the content pharmaceutical marketers are surprised in which consumers will congregate. of online conversations can start with a to learn how many healthcare-themed GlaxoSmithKline has already done this disease category different from what they videos are already online. For many with myalli.com, the Web site for its over- work on. Online discussion boards are brands, snippets from news or other the-counter weight loss product, alliTM. In public places, and members understand television coverage have been posted in addition to product information, how-to’s that any information shared there addition to consumer-generated videos. In (in both text and video) and assessment is publicly accessible, so reading the searching for online videos, marketers will tools to help consumers determine information shared in these communities want to search on both their own brands whether alli is right for them, the site also is not a violation of members’ privacy. as well as competitors. incorporates a very popular moderated discussion forum. As of late April 2008, 5 Listening to Consumers in a Highly Regulated Environment

the alli discussion boards boasted nearly type of community may benefit from 220,000 messages written by more than 189,000 registered users, and the site is the participation of a third-party moderator—someone clearly identified “ Patients are taking an increasingly proactive adding new users at a rate of 300+ every as affiliated with or representing the day. That is an incredible community of brand—who will take part in the role as healthcare people supporting and encouraging one discussion, answer questions and provide consumers, meaning that another to continue using the product— information, and generally keep an eye pharmaceutical marketers and an amazing opportunity for GSK to on what is being said. and brand managers now listen to its consumers. must navigate new and Provide materials that will help patients The alli message boards engage better understand their condition and unfamiliar waters.” independent moderators to review all its treatment, and have a more informed messages before they are posted to the discussion with their doctors. There are site. (There may be a delay of up to several options a brand manager might 24 hours before new messages are consider, such as a brief questionnaire posted.) The moderators are compensated that helps patients quantify their for their time, but “the opinions are their symptoms prior to a conversation with own,” according to the site. Employing the doctor, or a listing of questions that this type of moderated discussion is a patients with a particular condition great way to facilitate the conversation typically ask, which the patient could while also ensuring that the messages use as a discussion guide. (Depending posted do not veer off in an inappropriate on the disease category, these could direction. A moderator would also have even be divided into stages based on the the ability to screen for and follow up treatment cycle.) on messages that indicate an adverse experience with a product. Share condition information or how-to’s for treatment in the form In addition to launching a discussion of one or more podcasts that can be community (or instead of this approach, downloaded from the brand’s website. for companies that are not ready), there This brief video format allows patients are other options for helping to facilitate to watch again and again and to take the consumer discussion: information along with them for viewing at a convenient time. Go where the audience is. A brand team might consider partnering with Incorporate the voices of actual an existing discussion site to sponsor patients through personal stories on a subforum for discussion related to the brand site. These could include its brand or disease category. This success stories, treatment milestones, 6 Listening to Consumers in a Highly Regulated Environment

tips on living with and managing a debate that took place behind the scenes condition, challenges faced and overcome. Text is the traditional format for these prior to launching the blog—and the number of different groups that needed “ A proactive approach to learning about issues being types of stories, but marketers may want to be involved in the discussion, from to consider the power and influence of a Communications to PR to Legal. discussed is preferable video in which a patient tells his or her to reacting to an issue own story directly to others facing the J&J’s blog does have its limitations, and already snowballing within same treatment and prognosis. these are clearly spelled out on the site. There are certain subjects the authors will consumer discussion. ” Allow and encourage patients to link not talk about. The blog allows comments, to these resources from other sites. but all comments are reviewed before Patients and caregivers are hungry for being posted, and comments about information about the conditions that certain subjects—including comments affect their daily lives, and they will about products sold by J&J operating actively share what they find with others. companies and about any ongoing legal matters—are not likely to be posted. The Join the conversation editor does note that comments not Social media is here to stay. Web 2.0 posted on the site may be forwarded is a fact of life. Corporate blogging is to others within Johnson & Johnson for becoming a reality. Is there a role in this follow-up as appropriate. In addition, space for someone who openly represents the site is more strongly focused on the a pharmaceutical company? It may be consumer products side of J&J’s business hard to imagine this as a possibility than on the pharmaceutical side. within healthcare. But there was a time when automotive executives could not In the blog’s introduction, editor Marc imagine allowing a corporate blog—and Monseau writes that after reading other today, both GM and Toyota have blogs for just a few months, “it’s clear successful, popular blogs led by to me how important it is not just to high-ranking corporate executives. watch, but to join in productively. Doing that will take some unlearning of old Another company that is successfully habits and traditional approaches to blogging today—and is a little closer to communicating—and I will have to find home for pharmaceuticals—is Johnson & my own voice.” Monseau’s thoughts Johnson (www.jnjbtw.com). Editor Marc provide a concise summary of not only Monseau notes in his introduction that the value of joining the conversation, but creating this blog was “a big step” for J&J. also the challenges inherent in doing so. One can only imagine the planning and 7 Listening to Consumers in a Highly Regulated Environment

How might pharmaceutical companies input when questions (or misinformation) join the conversation? are shared, and even suggest that About the Author individuals follow up with their doctors if As Research Director, Consider starting a blog. Although it they mention unusual treatment effects. Healthcare, Melissa may take time to research, gain approval When this is done with an open, honest, Davies oversees for and launch a pharmaceutical-branded straight-forward approach, members of integrated Nielsen blog, marketers who raise the idea the online community tend to appreciate Online research and the fact that a company cares enough analytics for the they are not alone in thinking about about its consumers to meet them on company’s healthcare leveraging this platform on behalf of their own turf. practice, which serves the top 15 largest their organization. There is no doubt pharmaceutical companies in the U.S. as that launching a blog will take work and For any company, taking steps to begin well as many other healthcare clients. In planning—marketers who start now listening to social media discussion this role, Melissa has managed research may just be able to make it happen can be a challenging task, and this is projects to study patient/consumer down the road. especially true in the highly regulated perceptions about multiple disease pharmaceutical industry. But the potential categories, emerging and established Appoint someone from the brand rewards are powerful: companies stand treatments, and key marketplace issues team to take an active role in online to gain a better understanding of their affecting the healthcare industry. discussion as an representative consumers’ authentic voices, their Melissa joined Nielsen Online as a Senior of the brand. Under no circumstances successes and frustrations, their actual Analyst with BuzzMetrics, which provides should pharmaceutical companies try experiences. Patients can share in the monitoring and insights based on online a “stealth” approach—there is a high consumer-generated media (CGM). likelihood that this approach will be and their needs better understood. Many discovered and the potential damage to companies outside of the pharmaceutical the brand’s reputation is great. (In fact, legislation enacted in the U.K. in May of listening to—and, in some cases, 2008 makes it a criminal offense for a participating in—consumers’ online brand representative to falsely represent discussion. Within pharma, a handful of him/herself as a consumer in online companies have found ways to listen to discussion.) Having a brand representative and take part in the world of social media. active in the online community creates For other healthcare companies, though an opportunity to share information the challenges in getting started may about clinical trials or new research, seem particularly steep, the potential point individuals to a patient-assistance rewards can be well worth the effort. program, provide answers or additional About The Nielsen Company The Nielsen Company is a global information and media company with leading market positions in marketing and consumer information, television and other media measurement, online intelligence, mobile measurement, trade shows and business publications. Recognized as an industry leader in enabling companies to protect and promote brands through the measurement and analysis of consumer-generated media, Nielsen BuzzMetrics uncovers data-driven insights culled daily from more than a million blogs and social networks worldwide. Nielsen delivers trusted brand metrics, meaningful consumer insights and real-time market intelligence to help marketers compete and thrive in today’s consumer-driven world. To learn more about how Nielsen can help with your listening strategies, contact sales.us@nielsen.com or visit www.nielsen.com The Nielsen Company 770 Broadway New York, NY 10003-9590 Copyright ©2008, The Nielsen Company. All rights reserved. Nielsen and the Nielsen logo are trademarks of The Nielsen Company. 8 Listening to Consumers in a Highly Regulated Environment

Listening to Consumers 101, How Marketers Can Leverage Consumer-Generated Media

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