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More and more patients are using Facebook, YouTube, Twitter, and other social media outlets to discuss their health and treatments with peers and caregivers. Social media tools have become an effective way to expand reach, foster engagement, and increase access to credible, science-based health messages, reports the Centers for Disease Control and Prevention. The interactions must be personal within the social media space if consumers are to trust and become an advocate for a brand. Not unlike the paradigm shift from a product-centric to patient-centric business model, mapping health populations through social media will move the focus away from product messaging and toward building relationships. Not so long ago, patients and their caregivers had little share of voice in affecting the process of healthcare, but because of the proliferation of patient networking sites, this has changed seemingly overnight. With hundreds of nonpharmaceutical company-supported patient sites that allow for informing, sharing, and educating fellow sufferers and survivors for all types of diseases and conditions, patients are becoming empowered. Should this power of the patient be seen as a threat to the life-sciences industry? Absolutely not, our experts say. The more patients share their health experiences online, the more informed the industry will become, enabling it to improve its efforts of tracking disease and monitoring health outcomes. “More sophisticated technology enables different methods to gather, exchange, and analyze information, which will undoubtedly contribute to more sophisticated modeling of patient populations in critical health management areas,” says Michael Parks, executive VP, Vox Medica. “Such modeling has the potential to educate the industry on ways to refine product and disease-state awareness efforts, implement compliance and outcomes programs, improve prescription assistance programs, and enhance the dialogue between patients and the other critical touchpoints within a given patient population.” According to a Pew Internet & American Life Project report on peer-to-peer health relationships, one in four Internet users has gone online to talk with other people who are dealing with the same disease, condition, or medications. This peer-to-peer healthcare movement is gaining ground fast because it is an extremely important part of the communication landscape for patients, especially for people with a chronic disease who need emotional support and help with everyday issues, says Steve Rothman, president and chief creative officer, Cell Division. “For example, patient sites such as inspire.com, which as had 175,000 people sharing health experiences, and patientslikeme.com, which provides granular analytics about the patient treatment experience,” Mr. Rothman says. Brand-sponsored patient communities that build relationship equity are also on the rise, and both types of sites have a common link. “Both brand and unbranded sites allow for people with chronic and serious diseases to connect, share, and learn from each other,” Mr. Rothman says. CDC at the Forefront of Patient Communities The CDC is at the forefront of using social media to educate patients and monitor health trends. Several of the experts interviewed for this article praised the agency’s innovative thinking and cited it as a good example of how to use social media in the healthcare landscape. Amy Burnett, electronic media branch, division of news and electronic media, office of the associate director for communication, CDC, says the agency became active in social media in 2009 during the H1N1 outbreak. “The agency had been thinking about using social media for some time, but H1N1 ramped up the need for information that could be communicated quickly and efficiently,” she says. “We also learned that people wanted to receive CDC information through a variety of channels, and Facebook and Twitter were important resources. People wanted to receive information from these channels.” The CDC sites are so popular because the agency took the time to understand the nature of social media and effectively figured out how to use them correctly, she says. “It’s difficult to innovate and bring an emerging technology into a government agency, but we did it and now other federal agencies as well as other groups outside the government look to us because we paved the way,” Ms. Burnett says. The CDC is using social media as a way of communicating and more divisions are getting involved. For example, the CDC Injury Center uses social media to provide users with access to credible, science-based injury and violence prevention information. Ms. Burnett says the stories and conversations on this site prove that the government can provide value to patients. “The social media sites we have created show that the government can interact in a meaningful way with the public,” she says. “We don’t just push information out; we strive to make the content relevant so people can act on it, share it with family or friends, and ultimately change their behavior. Through social media, people can interact with us and ask questions. This is our goal in 2011 and beyond.” Patients’ desires to connect and share their experiences creates an opportunity for pharmaceutical companies to identify and characterize specific population demographics or pocket populations that could tie directly to product indications, says Peter Metz, VP of sales, digital scientific solutions division, Curry Rockefeller Group. “Our experience in the HIV area has demonstrated that effectively using social media to help map populations can be a very effective tool in identifying the hot spots or places of high incidences of HIV,” he says. “We can then aim our awareness and treatment efforts at these specific population areas for both physicians and patients.” Experts say life-sciences companies should refrain, however, from sending traditional promotional messages to these targeted groups. According to David Nash, M.D., founding dean, Jefferson School of Population Health, Thomas Jefferson University, the industry will have to fight the urge to peddle pills and will need to focus on the longer-term goals of improved patient outcomes and disease mapping. “Life-sciences companies have to try to find new ways to engage with patients without having the messaging look like advertising,” Dr. Nash says. “Pharmaceutical companies may need to partner with academic institutions, medical education companies, and content providers to provide patient-level educational materials about their products and related diseases. It will be very difficult for a single company to do on its own in this crowded space.” Mr. Rothman says disease management tools and resources are obvious areas for these types of joint efforts. “Cell Division has been involved in an online resource-sharing initiative between a major pharmaceutical company and its managed care and group practice customers,” he says. “This type of partnership is a sure sign that the environment is moving toward greater, if not perfect, alignment between all of the parties involved in healthcare. The different ways all these parties decided to pool their resources is still to be determined.” Dr. Nash says keeping track of what is being said in social media networks is important for several reasons. It is especially important to look at what people in clinical trials are saying, as well as comments about off-label usage. “Life-sciences companies have to troll the social network sites and keep tabs on what people are saying and doing; what they learn is going to open up a brave new world,” he says. Mapping the Patient Experience Kevin Green, VP of social media marketing, Digital Influence Group, says the pharmaceutical industry is recognizing the power of social media from a research perspective. “Pharmaceutical companies have access to information posted on patient sites,” Mr. Green says. “This consists of constant updates on what medicines people are taking or what diets or exercise regimens patients in certain disease states are on. These data allow companies to map out a patient’s entire treatment experience.” However, the industry has to do more than just listen to the conversation, he says. “Companies need to get down to an emotional level to effectively connect with the communities they serve,” Mr. Green adds. “The pharma industry must be a contributing member to the community and interact in ways that illustrate caring. It is important to understand what emotional impact a disease has on people, what their emotional needs are, and how to best connect with them.” And this, of course, is easier said than done, Mr. Metz says. While the industry has indicated a strong willingness to collaborate, the formula that ultimately benefits a pharmaceutical company’s marketing efforts in this situation has not been created as yet. He says this is the biggest challenge with regard to full buy-in on social media to improve health outcomes. “Every pharmaceutical company that we work with is aware of and understands the power of social media,” he says. “The challenge is to find a formula or structure that companies can use to help market products in a way that has impact, while complying with rigorous legal standards set forth by the pharma companies themselves, the FDA, and DDMAC.” The industry will be forced to take part soon in the social media revolution or lose all credibility as other organizations take the lead. The nature and frequency of conversations between patients and providers, as well as the discussions pharma companies have with patients, are on the edge of change. Instead of a dialogue that occurs only during health episodes, the conversation between a patient and his or her physician will become much more constant. The conversations between life-sciences companies and patients will be a different dialogue, and these too will become more consistent. “Companies will be in constant touch with patients all over the world, and if they can use that information to improve outcomes this will become very important,” Dr. Nash says. In the past, organizations were trained to create brand messages that focused only on a product or service they offered, but moving forward they have to broaden that message to bring value to consumers, Mr. Green says. “Most social media conversations coming from life-sciences companies have been product-centric; however, some organizations, such as LiveStrong and the CDC, are broadening their reach and understanding and have a brand that is trusted,” he says. “To become a trusted brand in the health conversation, companies can’t have a narrow focus; they need to provide information in real time and on demand.” Mr. Green adds that it’s imperative that life-sciences companies look beyond just where they provide value. The solution is to get more involved, not less. “It’s not about solving a problem but more about hearing a problem, and letting community members be a part of a movement that solves the problem,” Mr. Green says. “It’s not about providing information that will help the patient live life better, but about listening to the patient throughout the entire process and being an active part of his or her improvement or recovery.” The sooner pharmaceutical companies get involved in the emotional aspect of the conversation, the more and the faster people will trust the information they are providing, he says. “And they can get there by making messages human and personal,” Mr. Green adds. “Pharmaceutical companies have to start to humanize the process and the conversation. This is why organizations like the Susan G. Komen for the Cure are so successful. They maintain strong emotional ties with their members and they show they are there for patients every step of the way.” If a company can connect on an emotional level with one patient, the connection will grow exponentially. One patient will tell another patient who will tell another, and so on until the word has spread across the Web. The industry can no longer conduct business as usual; it must get personal by using social media to build healthy relationships. Tapping Into the Power by Getting Personal One in four Internet users with high-blood pressure, diabetes, heart conditions, lung conditions, cancer, or some other chronic ailment says he or she has gone online to find others with similar health concerns. By contrast, 15% of Internet users who report no chronic conditions have sought help online. Source: Pew Research Center’s Internet & American Life Project “Companies need to get down to an emotional level to effectively connect with the community they serve. ” Kevin Green / Digital Influence Group “The industry will have to fight the urge to peddle pills and will need to focus more on the longer-term goals of improved patient outcomes and disease mapping. ” Dr. David Nash Jefferson School of Population Health “Technology enables new methods for gathering, exchanging, and analyzing information, which contributes to more sophisticated modeling of patient populations. ” Michael Parks / Vox Medica “Patient communities create an opportunity for pharma to identify population demographics that could tie directly to product indications. ” PETer Metz / Curry Rockefeller Group “A peer-to-peer health exchange is an important part of communications for patients, especially those who have a chronic disease. ” Steve Rothman / Cell Division Experts outline the benefits the pharmaceutical industry can derive from having an awareness of what is happening in patient community social networks. Barbara Ficarra is a journalist, media broadcaster, speaker, medical blogger, consultant, media trainer, and health expert, and the creator, executive producer, and host of Health in 30 Radio Show. For more information, visit healthin30.com. “Patients are empowered and engaged in their healthcare. They are searching online for health information and they are active in social networking sites. Patients are looking for health information, treatment options, and emotional support. Pharmaceutical companies can develop their marketing strategies based on what is happening in patient social networks. Companies can gain insights into patient attitudes and behaviors. They can learn the needs of patients, and they can gain knowledge about their feelings and thoughts in real time. By deeply understanding the needs of patients, pharma companies can recognize how patients engage and interact with others in their social networking circles. Pharma companies can leverage social networking sites to analyze in real time the needs of patients, and based on transparent and real-time information, they can develop and influence their brands. ” Brian Loew is Co-founder and CEO of Inspire, which builds online communities for patients and caregivers and helps life-sciences organizations connect with them. For more information, visit corp.inspire.com. “There is a shift wherein patients are not just taking part in their care but defining it. Patients are making decisions about how to manage their diseases, they are defining their quality of life, and deciding how their dollars are spent. Historically, the industry has sought to answer its own questions. There are now opportunities to benefit from authentic conversations with patients about what they think is important. Patients are thought leaders too. Companies that respect patients by getting in front of this movement and embracing the shift will be the ones patients trust.” David Williams III is Chief Marketing Officer and Head of Business Development, PatientsLikeMe, a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. For more information, visit patientslikeme.com. “Social media is the canvas on which patients paint the entire picture of the experience they’re having with their disease and how it impacts their lives. By using social media, pharmaceutical companies get a glimpse of that picture and can begin aligning their interests with patients’ interests. As a result, you’ll see faster development of treatments and services, products that impact a patient’s quality of life — not just clinical outcomes — and greater patient influence and input on industry decisions. Patients are willing to share their health data and experiences. ” Patient Communities: Threat or Opportunity? With more patients using social media to report their health outcomes, pharmaceutical companies have the opportunity to get to know their customers better than ever. However, there are several challenges that come along with this opportunity. Just last year, a professor of computer science conducted a study of references to the flu in Twitter messages and was able to predict and track flu outbreaks. Southern Louisiana University Associate Professor Aron Culotta, Ph.D., and two of his students analyzed more than 500 million tweets collected through Twitter’s application programming interface. By using a small number of keywords to track flu-related updates, the method resulted in a 0.95 correlation with the Centers for Disease Control and Prevention’s (CDC) estimates of influenza rates in the United States. While designed for disaster recovery and to contain the spread of infectious diseases in devastated areas, the software’s ability to aggregate results in real time could have a broader impact on how treatment and disease information are collected in the future. Dr. Culotta tells PharmaVOICE: “By using social media analysis algorithms, it may be possible to forecast with greater temporal and geographic accuracy the demand for certain treatments or medications. For example, a spike in flu-indicative terms from Twitter users in the midwest may suggest that pharmacies there should be well-stocked with flu medication.” Amy Burnett, electronic media, brand division of news and electronic media, office of the associate director for communication at the CDC, says Dr. Culotta’s results will have major implications for the industry, but she’s not sure if the healthcare field in general is ready for collecting and analyzing that much information. “The implications of the study are huge,” Ms. Burnett says, “But I think that social media has more potential for monitoring the audience and discovering what members care about. Someday the data could also be used from a disease management perspective; there is so much information to be looked at and analyzed, but I’m not sure any of us are there yet.” Peter Metz, VP of sales, Curry Rockefeller Group, says the challenge is finding a way that allows the safety, efficacy, and tolerability drug information to be shared in a manner that can pass med-legal review. (Editors note: For more information on the study, go to sciencedaily.com/releases/ 2010/09/100928153809.htm or e-mail Dr. Culotta at firstname.lastname@example.org.) Experts Amy J. Burnett. Electronic Media Branch, Division of News and Electronic Media, Office of the Associate Director for Communication, Centers for Disease Control and Prevention, one of the major operating components of the Department of Health and Human Services. For more information, visit cdc.gov. Kevin Green. VP, Social Media Marketing, Digital Influence Group, a full-service digital and social media agency that helps clients make the shift to social marketing. For more information, visit digitalinfluencegroup.com. David B. Nash, M.D. Founding Dean, Jefferson School of Population Health, Thomas Jefferson University, which provides graduate academic programming, continuing education, and research in health policy, public health, and healthcare quality and safety. For more information, visit jefferson.edu. Peter Metz. VP, Sales, Digital Scientific Solutions Division, Curry Rockefeller Group, an independent full-service medical education agency delivering thought leader-focused medical education and publication planning and applied digital science initiatives. For more information, visit curryrockefellergroup.com. Michael Parks. Executive VP, Vox Medica, a strategy-based healthcare marketing communications company providing concepts for clients across the healthcare spectrum and around the world. For more information, visit voxmedica.com. Steve Rothman. President, Chief Creative Officer, Cell Division (formerly CCG MetaMedia), a life-sciences communication agency built for the digital world. For more information, visit celldivision.com. Social Media: Paving the Way Patient insights have the potential to change the course of medicine. Michael Parks, executive VP, Vox Medica, believes that the information available from patient communities can provide a big benefit for the industry and one that cannot be ignored. “Though informal and often not validated, the body of information exchanged between individuals can provide pockets of unprecedented insights into the thoughts and behaviors of a given patient population,” Mr. Parks says. “Though the concept is still in its infancy and, for the most part, disjointed between social media platforms, the potential use of social media as a bellwether for identifying trends, informational gaps, support tools, even improved communications between providers, allied health professionals, and others could pave the way for a more collaborative approach to population mapping and patient care.” The freedom that social media users have to express themselves and exchange information with anyone is one of the reasons Twitter, Facebook, etc. are thriving, however, pharma companies do not have the same freedom. “That freedom of exchange can create challenges for a pharmaceutical company-sponsored social site, especially when adverse events are topics of discussion,” says Peter Metz, VP of sales, Curry Rockefeller Group. “We still lack a model that makes complete sense from a traditional marketing perspective.” Social media is forcing brand building to morph into a more intense form of relationship building with patients, caregivers, and families — really everyone concerned with and touched by a disease or condition, says Steve Rothman, president and chief creative officer, Cell Division. “Social media is one of the best ways to open up the conversation and an even better way to deepen relationships,” he says. “But it’s not easy, and we’re just at the beginning.” Mr. Rothman says he has noticed an almost manic quality to the industry’s efforts to get out there and connect in a more personal way, and as a result some of the decisions being made could be risky. First, a company needs to determine if social media is the right fit for the treatment, disease category, and the audience, says Amy Burnett, electronic media, brand division of news and electronic media, office of the associate director for communication at the CDC. “A company should not embark on social media for social media’s sake,” she says. “Social media should be chosen because it aligns with the goals of the organization and will resonate with the potential audience.” Knowing what the audience and the channel members prefer and what their information seeking needs are, are the keys to success, Ms. Burnett adds. “Clearly defining the audience is a difficult task and a lot of work, but in the end, companies will have a much better product from these efforts,” she says. The CDC has created and made available on its website a social media tool kit for state and local public health professional groups, but there is a lot of information that any organization could use, Ms. Burnett says. The tool kit can be accessed at cdc.gov/ healthcommunication/ToolsTemplates/SocialMediaToolkit_BM.pdf. Another challenge for the industry is that many people tend to be very private about their health, and not everyone will openly share their experiences or join a Facebook page reflecting their condition or treatment. “When it comes to social media, the pharmaceutical community has one of the largest challenges ahead of it,” says Kevin Green, VP of social media marketing, Digital Influence Group. “Getting involved with Twitter and Facebook is a challenge because most people don’t want to become a fan or ‘like’ a treatment they receive. Overcoming this challenge will be difficult, but if companies focus on the caregivers, family members, and friends who surround the patient they will successfully grow a community.” He adds that companies also need to focus on the bigger concept of creating health behavior change and address ways to prevent certain health issues. “Brands that connect patients with peers who struggle with the same challenges, that organize those patients to educate the people around them, and allow them to be a part of the movement toward change, will be successful,” Mr. Green says. “Getting that type of information out there will bring the industry much greater success than companies are having now with only offering a specific solution.” Another challenge facing the industry is the dramatic swing to the online “opt-in” world. While this raises the engagement bar considerably, it can be very difficult for pharma companies to get people to opt-in in the first place. Companies need to be prepared to offer perceived value to the patient. According to Mr. Rothman, the lines between success and failure are very clear in social media. “Companies either have some type of information that compels patients because it addresses their urgent need or interest related to a serious chronic disease, or they don’t,” he says. “Companies can either provide patients with information and support that makes a difference in their lives, or they don’t; they can either offer this online audience a workable way to connect with others who share their experience, or they don’t. It’s become simpler to differentiate what works and what doesn’t.” Despite all of the challenges, Mr. Green still sees opportunity for the pharma industry in the social media space. “Although right now I don’t believe any life-sciences company is doing an exceptionally good job, there are a couple that could become leaders if they put the right foot forward.” The right approach involves being focused on the emotional aspect of disease and being involved in the patient community conversations, he says. Patients will appreciate the fact that a company is sponsoring a site that allows discussion with fellow patients, but if the company doesn’t show any interest in the actual discussion, patients may take a negative view of the company. “If a company is not interested in hearing the community members’ opinion or possibly allowing them to be a part of creating change then that company is missing a huge opportunity,” Mr. Green says. Mr. Parks does not agree that the industry has to have a dominant voice online, but believes it should be a credible and contributing part of these conversations. He believes that social media presents a great opportunity for pharma companies to be viewed as leaders in harnessing and applying the knowledge gained from what is already being said and done by credible, independent online contributors across the healthcare spectrum. “The recent proliferation of the online exchange among fellow sufferers and caregivers on social networks cannot be ignored,” he says. Patient Community Builds on Its Networks PatientsLikeMe has launched its 12th free online community. This one, called Transplants, is for people who have received organ transplants, including heart, lung, liver, and kidney. Novartis is supporting the development of this community. “Giving back” is a major discussion topic among organ recipients and is the theme of two new programs being launched by PatientsLikeMe. The first is a peer program called PatientsLikeMeMentors, which allows patients to create one-on-one relationships to share best practices and answer common questions about their treatment journey. PatientsLikeMeInMotion, the second program, helps members who share the most data to raise money for their teams participating in fundraising events. It is supported solely by PatientsLikeMe, which will make donations on behalf of patients to nonprofit organizations of their choice. Source: PatientsLikeMe. For more information, visit patientslikeme.com. Amy J. Burnett. Electronic Media Branch, Division of News and Electronic Media, Office of the Associate Director for Communication, Centers for Disease Control and Prevention, one of the major operating components of the Department of Health and Human Services. For more information, visit cdc.gov. Kevin Green, VP, Social Media Marketing, Digital Influence Group, a digital and social media agency that helps clients make the shift to social marketing. For more information, visit digitalinfluencegroup.com. David B. Nash, M.D. Founding Dean, Jefferson School of Population Health, Thomas Jefferson University, which provides graduate academic programming, continuing education, and research in health policy, public health, and healthcare quality and safety. For more information, visit jefferson.edu. Peter Metz. VP, Sales, Digital Scientific Solutions Division, Curry Rockefeller Group, an independent full-service medical education agency delivering thought leader-focused medical education and publication planning and applied digital science initiatives. For more information, visit curryrockefellergroup.com. Michael Parks. Executive VP, Vox Medica, a strategy-based healthcare marketing communications company providing concepts for clients across the healthcare spectrum and around the world. For more information, visit voxmedica.com. Steve Rothman. President and Chief Creative Officer, Cell Division (formerly CCG MetaMedia), a life sciences communication agency built for the digital world. For more information, visit celldivision.com.