Just a year ago, Pew Internet & American Life Project reported that nearly 113 million Americans were using the Internet to gather health-related information. It’s not news that the Internet has become a magnet for people looking for quick answers when it comes to health issues, whether or not the results of searches are providing them with the best information on a regular basis. Additionally, statistics from JupiterResearch show that almost 80% of people who use the Internet to “connect with others” also trust peer-created information which can be found on blogs, podcasts, and social networks.
Today, healthcare-centric social media encompasses a variety of tools for people to exchange information including message boards, chat rooms and networking websites, such as Facebook and MySpace. Furthering this effort is the availability of new platforms for individuals to create their own social networks without the need for extensive technical knowledge, such as Ning (http://www.ning.com), which provides a customizable social networking platform for free. Many of these communities are geared specifically towards people living with an illness, which represents an opportunity as well as a challenge for organizations wishing to participate in those groups.
While the Food & Drug Administration has specific guidelines for pharmaceutical companies participating in social networks regarding off-label promotion and adverse event reporting, it is possible to engage with these communities in a way that furthers company reputation and allows for patient engagement.
Examples of Current Healthcare Social Networks
There are currently four “types” of social networks with a healthcare focus: those founded by individuals, those supported by nonprofit organizations, those created by independent start-ups and those started by established healthcare and pharmaceutical corporations.
Social networks started by individuals have had, by far, the easiest time maintaining a nonbiased platform because they are fully “user-created.” Although the information may not always be as accurate as we would like, sites such as social networks TuDiabetes.com and PlanetCancer.org have gained popularity and usership simply because they come from people who understand the community best. Most of these sites are very focused on a particular disease or condition, such as diabetes or cancer.
While some of these networks offer opportunities for advertising or other marketing efforts, it is inappropriate to participate as a marketer without stating your intentions up front and making, at a minimum, the moderating team aware of your presence. Additionally, the uncontrolled nature of these forums provides some regulatory risk.
Nonprofit organizations have definitely seen success, and in some cases, individuals used their network to form not-for-profit entities (such as PlanetCancer.org) based on growth and interest of participants. Other not-for-profit organizations have used their constituents to build an online version of their offline social network, as exemplified by I’m Too Young For This, an organization for young cancer survivors.
Independent start-up corporations have also launched several new social networks, which serve as platforms for smaller disease-focused categories. Websites such as Dailystrength.org and PatientsLikeMe.com have channels for dozens of diseases all housed on one website.
One such startup, Disaboom (http://www.disaboom.com), now reaches thousands of members, is a public company, and accepts advertising. Members on that site can blog, chat with other members, participate in message forums, and read news and information provided by health experts. Additionally, members of the network can produce and publish multimedia content of their own for all to see. While Disaboom is a for-profit organization that is beholden to shareholders, it has, to date, been one of the most successful examples of a social network reaching a reasonably significant audience while carrying a sizable load of advertising and marketing messages.
Corporate Media and Healthcare Entities involvement in healthcare-focused social networks is varied. One of the larger examples to date is Yahoo!’s Health & Wellness groups site. These resources are usually free, relying on advertising to support costs and with a strict editorial policy of not allowing advertisers to influence content.
In October 2007, Pfizer announced a partnership with Sermo, a private social network exclusively for licensed physicians. Pfizer was looking for a more efficient way to interact with doctors, and doctors, according to Sermo, were looking for ways to interact with the pharmaceutical company that didn’t involve using up precious work hours. Under the new partnership, Pfizer staff physicians can participate on the network, asking questions and providing new information. While they can participate in the community, it is reported that if Pfizer offers comments that are too biased, rebuttals will be given.
Also in 2007, MySpace and Reckitt Benckiser Pharmaceuticals launched Addiction411 (http://www.myspace.com/addiction411), in an effort to curb drug abuse and dependency among the 16-25 year old demographic.
In early April 2008, Johnson and Johnson announced that it was purchasing Children with Diabetes (http://www.childrenwithdiabetes.com), a twelve-year-old website for parents of children with type 1 diabetes, which offers a message board and chat room. Although CWD became a part of J & J, a distinction was made between the family network and the other pharmaceutical areas, which allows CWD to continue running advertisements from J & J’s competitors.
While other corporate entities might work their way into the CWD community, J&J is now perceived as “trusted” within the forums and discussions, in that the existing users know that the company has to be accountable for anything it says, writes, or requests. This will most likely become part of the “norm” for the business community, as leveraging existing groups will prove more valuable than following the “build it and they will come” mentality that has not been consistently well-received online.
Levels of Involvement
Getting involved in a social network requires significant consideration regarding several issues. First, the time needed to monitor and submit off-label and adverse reaction posts needs to be considered and weighed against the benefit. While a “hands-off” approach may be possible in launching a network with the help of a third-party, there needs to be a simple way that the organization could participate while not being “responsible” for 100% monitoring of the discussions. V-Fluence, a partner of MWW Group has expertise in just this issue.
Another factor that should be discussed early on is that of competition. For any given industry, there are established communities of consumers. Purchasing or partnering with the community, similar to how Johnson & Johnson engaged with Children with Diabetes, allows the company to become an integral part of the community without having to start from ground zero.
Starting yet another social network (called YASN by many online community members) would be challenging in that you typically have to win over the community that may have a heavy presence elsewhere. Users only have so much time to spend participating in their communities of interest, be those health, family, sports, or news-related topics. If a user is already on Facebook, MySpace, Gather.com, and one other specialized service, and one or more of those existing platforms already contains information or some “organized” fashion of gathering for people with similar health-related issues or beliefs, then starting a new space without first truly involving yourself in those spaces to assess its need or even bringing in an “advisory board” of users from those places, your social network might fall flat.
In starting a healthcare social network, privacy is the paramount consideration. Despite the preponderance of shared personal health information on the Internet, “sharing” that information with an independent organization vs. a pharmaceutical/healthcare company is quite a different story. The company needs to be up front about who owns the site and controls the editorial content. A detailed conflict of interest policy and clear guidelines on advertising needs to be developed and available for perusal. Additionally, statements on what kind of involvement the company will have on the social network need to be readily available, e.g. will it be passive, active, or minimizal based on the requests of the participants as a whole.
One thing that corporate entities are seeing consistently across the blogosphere and social networks is that being 100 percent transparent works every time. Most people are happy to hear from an executive of a company that they blogged about, or have the opportunity to ask questions of a subject matter expert through a social network, in the way that LinkedIn’s Answers (http://www.linkedin.com/answers) has created that marketplace for its membership. To the network member, access to your volumes of data, doctors or other spokespeople is of far more value than overt messaging that must be waded through.
Ame Wadler is Executive Vice President, Chief ManagementOfficer and Global Healthcare Practice Chair at MWW Group.