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Using Social Media in Oncology for Education and Patient Engagement

Using Social Media in Oncology for Education and Patient Engagement

We presented an interactive session entitled “Using Social Media in Oncology for Education and Patient Engagement” at the American Society of Clinical Oncology (ASCO) 2012 Annual Meeting. This article summarizes the points made in those presentations.

What Are “Social Media”?

FIGURE

A Simple Visual Explanation of Social Media

Social media (SM) encompass a number of online and mobile resources that provide a forum for the generation, sharing, and discussion of individuals’ ideas and content.[1] Kaplan and Haenlein describe six types of SM: collaborative projects (eg, Wikipedia), blogs and microblogs (eg, Twitter), content communities (eg, YouTube), social networking sites (eg, Facebook, Google+), virtual game worlds (eg, World of Warcraft), and virtual social worlds (eg, Second Life).[2] Although the SM “space” can be construed as highly complicated,[3] it can also be conceived of more simply (Figure).

Just as email, websites, and the Internet were once seen as novelties, SM—especially Twitter—have been seen by physicians as a digression, or something only celebrities or teenagers engage in. People are learning that there is power and utility in SM—just as they learned with email—and that Facebook and Twitter have a large impact on millions of people in our society. The most popular SM platforms include Facebook, Twitter, blogs, and YouTube. However the newer, visually based Pinterest SM site is driving more online sales than any other network, and "brands are growing faster than on Twitter," according to SocialMouths.com.[4]


Michael A. Thompson, MD, PhD

Anas Younes, MD

Robert S. Miller, MD, FACP

The SM application or network is merely a tool to access the social community—where the value and content are. The Mayo Clinic is a power-user of SM and has noted: "Our patients are doing it, so this is where we need to be".[5] That sentiment is echoed by the comment, "That’s where people are. That’s the bottom line," from Ed Bennett, who tracks the use of SM in healthcare as Director of Web Strategy for the University of Maryland Medical Center. Indeed, we are moving from “Web 1.0” to “Web 4.0”[6,7]:

Web 1.0: Content

• Passive reading of medical information.

• Example: www.cancer.gov.

Web 2.0: Communities/interaction

• Examples: www.cancer.net, disease-specific message boards.

Web 3.0: Commerce and data-driven applications

• Mobile health technologiges.

• Examples: iTunes mobile apps.

Web 4.0: Coherent web

• Information melded in a coordinated way around a single patient.

• Patient interactivity (e-patients): “empowered, engaged, equipped, enabled.”

• Patient-driven comprehensive networks.

• Examples: www.Ihadcancer.com, Avvo, HealthTap, Medicity, Emdeon

Tools and Benefits

The various SM platforms each have their pros and cons. Facebook and Twitter are widely used but may not convey detailed or subtle information adequately; however, they can be linked via tiny URLs to blogs, YouTube movies, or websites with more information.

Twitter has been described as “the trailer for the Blog movie” [paraphrased].[8] Also, tweets may predict publication citations, suggesting that “Twimpact” (twimpact.com) may be a new, earlier predictive impact factor, with highly tweeted articles 11 times more likely to be highly cited than less tweeted articles.[9] Also top-cited articles can be predicted from top-tweeted articles with 93% specificity and 75% sensitivity, and tweets can predict highly cited articles within the first three days of article publication. SM dashboard applications (apps) such as HootSuite, TweetDeck, and others can help organize and filter Twitter and other content. Apps such as Twitpic can be used to upload pictures to Twitter.

Risks and Policies

Some of the reasons oncologists don’t use Twitter include: lack of time, fear of the unknown, and not understanding it. However, if physicians are interested in trying out Twitter and other SM applications, there are some simple rules to live by—the simplest being to behave online as you would offline and to always keep in mind that any online bad behavior has a much wider audience. Farris Timimi, MD, the medical director for the Mayo Clinic Center for Social Media, has suggested the following 12-word SM policy[10]:

• Don’t lie, don’t pry.

• Don’t cheat, can’t delete.

• Don’t steal, don’t reveal.

A study from Chretien et al showed that in a sample of 5,156 physician tweets, 3% were considered unprofessional, with 0.7% revealing potentially protected health information, 0.6% using profanity, and 0.3% sexually explicit.[11] Of the users responsible for potential privacy violations, 92% used their full name and photograph in their profile. These data, and this phenomenon generally, have been commented on by many, including Dr. Bryan Vartabedian in his 33Charts.com blog post, “Physicians, Risk and Opportunity in the Digital Age.”[12]

There is likely a learning curve for physicians who want to use SM. One useful resource is “Practical Guidance: The Use of Social Media In Oncology Practice” by Dizon et al.[1] There are benefits and risks to SM. If you are interested, find a mentor, and dive in—slowly. Start by observing, learning, and then commenting.

Use of SM for Clinical Trial Recruitment

With hundreds of millions of individuals using SM outlets such as Facebook and Twitter, there is an unprecedented opportunity for physicians, healthcare professionals, caregivers, and patients to connect and share critical information in real time. One obvious benefit is the sharing of information about high-priority clinical trials for cancer. In the past, we used to rely on mass emails and flyers that were mailed out to oncologists nationwide. However, these methods were inefficient and sometimes costly. They mainly targeted oncologists, who were bombarded by so many other flyers and mass emails that notices about important clinical trials wound up in their spam folder—or the wastebasket. In contrast, using SM allows the dissemination of the same information to a larger number of individuals, which may include patients and caregivers who have a vested interest in receiving this information. One does not need to know a recipient’s street or email address to reach out and communicate. Patients can then ask simple questions about a trial to determine whether they are suitable candidates before they travel to a referring center to participate. They can choose to identify themselves as patients or they can inquire anonymously. Creating an awareness of a clinical trial should follow institutional rules but can be as simple as providing a link to the trial on Clinicaltrials.gov. Providing any additional information may require Institutional Review Board approval.

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