Engaging the Empowered E-Patient
The growing consumer use and exchange of online health information is changing the balance of power in the patient-physician relationship by enabling the consumer to take a more active and informed role in making decisions about their healthcare.
n the 2010 edition of its Cybercitizen Health U.S. study, Manhattan Research identified a population of 99 million U.S. adults as being “e-empowered" consumers, having completed at least one of the following actions as a result of the information or tools they found online: » Challenged their doctor’s treatment or diagnosis » Asked their doctor to change their treatment » Discussed information found online at a doctor’s appointment » Used the Internet instead of going to the doctor » Made a healthcare decision because of online information “We’ve known for years that the Internet was empowering consumers to play a more active role in their healthcare, but this study quantifies how that is happening both in and out of the physician’s office," says Meredith Ressi, VP of research at Manhattan Research. “Ten years ago when we first conducted this study, medicine was primarily physician-centric, with the doctor acting as the primary health information source used by most consumers. Today, when consumers do go to the doctor, they are able to have more informed conversations about their care, thanks to the availability of online information." Making Social Connections Tom Ferguson, M.D., founder of e-patients.net before his death from cancer in 2006, described e-patients as individuals who are equipped, enabled, empowered, and engaged in their health and healthcare decisions — and social media plays an increasingly crucial role in this process. According to a survey conducted last spring by Epsilon and eRewards, 40% of online consumers engage with social media on health sites either by reading or posting content, though frequency of engagement varies widely. The Epsilon report, A Prescription for Customer Engagement: An Inside Look at Social Media and the Pharmaceutical Industry, observes that consumers use healthcare social media for support and a sense of intimacy from people going through a similar experience, as well as foundational information about their specific conditions and symptoms, information about drugs and supplements, and the latest health news. “Our research shows that social media is a valuable forum for patients to discuss their health issues and concerns while connecting with others facing similar circumstances," says Mark Miller, senior VP, Epsilon Strategic & Analytic Consulting Group. “This participation provides reassurance and intimacy, and many of the individuals who are highly engaged in social media feel better equipped to manage their health." However, not everyone is comfortable opening up online and using social media to discuss their condition. Most nonengaged individuals surveyed for the Epsilon study said they didn’t trust information received via social media, preferring their doctor’s advice over that of an online peer. Lack of time was another reason cited for not participating in social networks. If social media had more visible information and easier ways to participate, perhaps more patients would engage more frequently, the report suggests. The Epsilon study also found that among Internet users, product/health Websites are as important as healthcare provider interactions when it comes to gaining relevant health information. Third-party health- related sites were cited as the most important destinations for both social and editorial content, despite varying levels of credibility. Many respondents also expressed mixed feelings about how pharmaceutical companies should participate in Websites and social media, though most say they are open to some level of participation as long as it is transparently disclosed. “The important question is how can pharmaceutical companies get involved in the dialogue without disrupting the conversations taking place?" Mr. Miller observes. “One way is by joining forces with nonprofit organizations, regulators, and other third parties. We are finding that consumers are open to this type of participation as long as it is clearly disclosed and provides impartial validation of information posted by other users." Jeanne Barnett, president of Medrise.com, and founder/moderator of cysticfibrosis.com, says while many pharmaceutical companies have been involved in social health communities indirectly, many are now developing robots to listen in on e-patient conversations on third-party websites, such as cysticfibrosis.com, Facebook, and other social media outlets. “Pharma brand teams, in an indirect way, can learn what patients are saying about their products," she says. “It’s likely those interceptions produce many ‘ah ha’ moments, exposing reasons for adherence and nonadherence. Information gleaned from their passive listening may produce new marketing strategies. And now the team composition is expanding to include health opinion leaders (HOLS) from social health communities. The collaborative brainstorming leads to the creation and review of games, apps, surveys, polls, video, animations, webcasts, forums, blogs, podcasts, vlogs, etc. for the e-patient target audiences. All members of the brand team, including regulatory and legal, ideally, would be part of this new culture and brand building process." The benefit of HOLs, Ms. Barnett says is that they may view this as an obvious benefit of being in the community. They can be called on or will come forward to help design, review, and create the buzz for these new products. Games Patients Play Pharma-sponsored video games have come a long way since Novo Nordisk’s Captain Novolin for Super Nintendo first hit the shelves in 1992. Given the growing popularity of online gaming via Facebook and other Web networks, pharma companies are adopting the format as an entertaining and engaging format for delivering health information to patients. One recent example is HealthSeeker, a Facebook game aimed at helping users manage their diabetes by combining a supportive social network with important information on living with the disease. HealthSeeker encourages players to enlist Facebook friends as sources of inspiration and ongoing encouragement in improving their understanding and management of diabetes. The game, available in English and Spanish, was developed by the Diabetes Hands Foundation, in collaboration with the Joslin Diabetes Center and Joslin Latino Diabetes Initiative, with support provided by Boehringer Ingelheim Pharmaceuticals. “Boehringer Ingelheim, at least in HealthSeeker, does not — and cannot, per our agreement with them since we are a nonprofit — use the game as a marketing vehicle," says Manny Hernandez, president of the Diabetes Hands Foundation. “The company views it as a patient advocacy vehicle: a way to enable the development of patient resources to improve the lives of people whom they may or may not serve, but they are nevertheless positively impacting lives by financially supporting this effort." Other companies employing gaming as part of their product campaigns include Bayer and Sanofi-Aventis. The Didget blood glucose monitoring system from Bayer Diabetes Care includes a Nintendo DS and DS Lite handheld gaming component that rewards children with diabetes for building consistent testing habits and meeting personalized blood glucose target ranges. Sanofi-Aventis’s Ambien CR product page includes an online game called “Silence Your Rooster," in which the player throws pillows at roosters to keep them from crowing and waking the patient, purportedly to illustrate the challenge of living with insomnia. Within the cystic fibrosis arena, one artistic member of the community made a set of emoticons specifically representative of the treatments and moods associated with a patient’s day. “Now, members can upload the sounds of their day," Ms. Barnett says. “These may include coughing, nebulizing, CPT, vest machines, and even flatulence. The sound engineers in the community put the sounds to music…or perhaps the sounds are the music? The point is that pharmaceutical companies have the resources and lots of brain power when it comes to inventions." One potential risk in using interactive gaming to connect patients with pharmaceutical information is that the games can appear to trivialize the use of medicines intended to treat serious conditions. In Pfizer’s 2008 online gaming effort, Viva Cruiser, players guided a motorcycle down a desert highway, receiving points for “picking up" romantic gifts that included little blue Viagra pills. The game riled critics, who accused Pfizer of positioning the erectile dysfunction treatment as a lifestyle drug. Pfizer pulled the game after a couple of weeks without explanation, around the same time the company received a cease-and-desist letter from the FDA regarding an unrelated online Viagra ad that failed to include the proper warning message. Despite these early missteps, Pfizer continues to explore innovative ways to employ new media tools in its patient outreach efforts. The company recently collaborated with the Alzheimer’s Association on a Website, timetofacealz.org, where people are encouraged to share photos and stories related to their personal experience with Alzheimer’s disease. The “Time to Face Alzheimer’s" initiative included a featured float in the Tournament of Roses parade on New Year’s Day and showcases the submitted photos and stories through an interactive Faces of Alzheimer’s mosaic on the Website. “Games can help with motivation and engagement," Ms. Barnett says. “Under certain circumstances games can also improve ability. Today’s consumer gaming technology is very powerful and sophisticated. If it can be used for training pilots, surely it can be used for training patients. Sometimes trying to improve behavior via engagement alone is not sufficient. If something is too difficult, no amount of ‘fun’ is going to help." Mr. Hernandez adds that social media is a layer on top of the Web that enables two-way conversations in ways that weren’t possible before. “This means the ‘game’ is changing, because patients are going to be talking to pharma whether pharma likes it or not," he says. “And some of the things they are going to say are going to be good and some not. It’s all part of the conversation: pharma companies will have to be ready to reply. If they don’t, in the absence of an answer, people will draw their own conclusions. I don’t think that’s a good position to be in." To view an interview with Manny Hernandez, President of the Diabetes Hands Foundation, explain how encouraging healthy behavior can be fun by leveraging gaming and social media, go to: www.pixelsandpills.com/2010/10/01/manny-hernandez-diabetes-hands-foundation-talks-health-seeker/
