Socializing Medicine: Oncology Joins Facebook Era

The latest cancer study. A book-signing event. A hospital mural project. These topics and more are all fodder for the Fox Chase Cancer Center’s Facebook page. And then there is the regular fl ow of comments from patients and their loved ones: “I will be starting treatment soon and I can’t wait to meet my treatment team,” “I am starting to see again that there is life after cancer,” and “Your nurses are amazing. I don’t know where I would be without this hospital.”

Fox Chase regularly updates its popular Facebook page with events and contests, the latest research findings, big hospital news, and small items such as staff awards and snow closings.

Two years ago, this presence for Fox Chase was nonexistent. The Philadelphia-based cancer center had a limited online social media reach that consisted of what 1 staff member described as a less-thanrobust YouTube channel where short videos were posted. But after hearing about the efforts of other hospitals to harness social media, leaders at Fox Chase embraced the idea of starting a Facebook page as a way to better engage the community and promote the hospital.

The result: Fox Chase now has a Facebook page that is updated several times a day and is followed by 5000 fans.

“We were very fortunate that our board members saw the value early on in having a Facebook presence,” says Lisa Bailey, Fox Chase’s director of Social Networking Communications. “The response has been amazing. The page has really helped provide people with a strong sense of community.”

Welcome to the brave new Internet social media world for healthcare commonly called Healthcare 2.0. Like Fox Chase, more and more physicians, including oncologists and other specialists, as well as medical facilities, are jumping on the social media bandwagon in order to provide reliable medical information to the public, connect with patients, and promote their services, with many larger organizations dedicating full-time staff to managing their social media presence.

Fox Chase is 1 of more than 900 hospitals that now have a social media presence on sites such as Facebook, Twitter, LinkedIn, Foursquare, or YouTube. Two years ago, only a little more than 200 hospitals had such a presence, according to data collected by Ed Bennett, manager of Web operations at the University of Maryland Medical Center in Baltimore. As of January, Bennett calculated that 906 hospitals had a total of 3087 social networking sites, with Facebook being the most popular.¹

In the oncology sphere, the American Society of Clinical Oncology (ASCO) reached more than 2000 followers last year with its Twitter posts. The organization also uses social networking sites to connect not only with patients but also with oncologists who have distinct and specialized common interests.

Competing With “Dr Google”

The increase during the last 2 years reflects the healthcare industry’s recognition that a growing number of people are obtaining healthcare information online from what some physicians refer to as “Dr Google.”

A survey by the Pew Internet & American Life Project released last month found that a growing number of Americans, about 8 in 10 Internet users, or about 59% of Americans, look online for health data, with the majority of them searching for information about a specific medical problem or treatment.²

And, a recent Harris Interactive Poll found that not only are more people using the Internet to find health information, but also that the vast majority trust the advice that they find. Only 8% said they believe the information they found was unreliable.³

Doctors are spending more and more time online for professional purposes as well. In a recent Manhattan Research Survey, physicians reported spending 8 hours online for professional purposes each week in 2010 compared with 4.5 hours in 2006.⁴

Yet enthusiasm for an online presence also is mixed with concerns. In his 2010 presidential address, Douglas W. Blayney, MD, former ASCO president, highlighted both the benefi ts and challenges posed by the digital revolution.

“Let’s look at how we and ASCO are planning to cope with this information revolution to make sure the right information is available at the right time to the right person, that it informs what we do each day, and that what we learn in the care of our patients is transformed into both better treatments and more consistent quality,” he said.

“The reality is that our way of communicating is changing the way we relate,” Blayney said. “It is more important than ever to ensure that technological efficiencies in sharing information do not erode the human connections that are so critical to both our personal and our professional lives. That said, the learning health system necessarily relies on the systematic collection, reporting, and analysis of data. Efficient sharing of clinical data informs the next clinical trial, supports higher quality of care, and supports a stronger patient-physician relationship.”⁵

Lee Aase, the manager of syndication and social media for the Mayo Clinic, acknowledges there is still uncertainty among some doctors about using social media, but says people are overcoming that uncertainty and moving on to embrace its features.

The Mayo Clinic, an early adopter of social media with a presence since 2006, offers blogs, a Facebook page with more than 3000 followers, and a YouTube channel with more than 1100 videos of doctors talking about illnesses, treatment, and research. A hospital video of a couple playing the piano in a clinic lobby went viral, gaining international media attention and attracting more than 7.5 million visitors.

Aase argues that hospital and medical practice leaders should overcome their reservations about using social media, noting that even if they block employees from having access to social networking sites during working hours, employees can access the Web anyway using their cell phones. “Really, you already have all the risks, so why not be proactive and use it to your benefit and provide people with training and guidelines to use social media responsibly?” he says.

Aase believes that the unforeseen implications of social media are more likely positive than negative, and that the best way to promote responsible use of social media is to educate employees and have written policies about ethics and usage. The Mayo Clinic has detailed policies for both employees and users of its social media sites.

A similar point was raised in a research letter in the Journal of the American Medical Association last month that provides a snapshot—and some concerns—about the ways physicians are using Twitter.⁶ Investigators examined postings by 260 self-described physicians with ≥500 followers during a 1-month period last year and analyzed the content of 5156 tweets.

The researchers characterized 144 postings (3%) as unprofessional, including 38 tweets (0.7%) that potentially violated patient privacy. Of the 27 users (10%) who posted the potential privacy violations, all but 2 (92%) could be readily identified by their full name, photo, or Web link.

“Ethical breaches and unprofessional content were rare but observed,” the study team wrote. “Accountability for health professionals, in addition to greater education and guidelines, may be needed to maximize potential societal and professional benefit through engagement with social media.”

Indeed, a growing number of agencies are adopting policies. The Centers for Disease Control and Prevention recently released a 60-page “toolkit” for medical professionals offering guidelines for using social media, and the FDA is expected to issue guidelines related to Internet and social media promotion of products it regulates in coming months.

The Ohio State Medical Association also created a 10-page report called Social Networking and the Medical Practice: Guidelines for Physicians, Office Staff and Patients, and the American Medical Association adopted a policy of its own at its semiannual policymaking meeting in San Diego in November.

The AMA policy, fewer than 400 words long, focuses on cautions and safeguards that physicians should keep in mind for their patients’ privacy and their own careers. (Excerpt on right.)

Robert Stephen Miller, MD, is a medical oncologist specializing in breast cancer and biomedical informatics at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore, Maryland.

He serves on ASCO’s Electronic Health Records Workgroup, blogs frequently for ASCO, and is an avid Twitter user. He says that while the AMA guidelines are a big step for physicians, he was hoping for something more robust in terms of a policy. “The AMA policy focuses on the bad stuff, and what not to do,” he said. “An opportunity was missed to highlight the benefits of social media and the constructive ways it can strengthen engagement and enhance patient-physician communication.”

Miller and other doctors say social media can improve the patient experience, ensure that reliable information is available for those seeking medical advice on the Web, connect professionals who share similar interests, help influence public policy, and reach a broader audience.

He points to the Mayo Clinic’s written statement of its social media philosophy as one that articulates a positive vision. That statement reads, in part, “The Mayo Clinic believes individuals have the right and responsibility to advocate for their own health, and that it is our responsibility to help them use social media tools to get the best information, connect with providers and with each other, and inspire healthy choices.”

Many best practices, such as not disclosing private information, are a matter of common sense, Miller said. “I don’t even include any anonymous patient information,” he said.

Another principle is not to give individual medical advice using social media. “As a physician, I am also not practicing medicine when I use social media,” Miller said. “I may talk about a medical issue in general, but I don’t use the medium to practice medicine and give individual advice to patients. That is not appropriate.”

Setting Rules and Admitting Mistakes

The Mayo Clinic’s policy for employees, which many other institutions, including Fox Chase, used as a model, reminds employees that policies that apply to other areas of their lives also apply to social media. The policy calls on employees to use good judgment, strive for accuracy, and not use their Mayo e-mail address when expressing personal views.

Mayo’s Code of Ethics says Mayo will acknowledge and correct mistakes promptly, reply to e-mails and comments when appropriate, link directly to online references and original source materials, and disclose conflicts of interest.

A Mayo Web page called “Friday Faux Pas” highlights real-life mistakes made using social media. For example, a recent post discussed how nurses in Scotland posted pictures of a surgery on the Internet and were suspended.

“We don’t just want to be fan boys for social media,” Aase said. “There are certain risks. The point is the problem is not the social media itself, but that social media is the means by which the communication happens that was already a privacy violation.”

Monitoring Outside Posts

Bailey, who runs the Fox Chase Facebook page, said she has rarely encountered issues in terms of what outside users post to the page. She was surprised when a recent post about a state going smoke-free generated all sorts of reactions from followers.

“I could not believe all the comments it received,” she said. “I considered taking it down. But it opened up a dialogue where people could share their thoughts. As long as people were not using nasty language, I felt it was OK to keep it up.”

Bailey said monitoring the Fox Chase page is critical. She and other staffers check it regularly and respond to posts when necessary, providing contact information for people seeking individualized information. It is rare, but now and then she does have to ask someone to remove a post.

“A woman posted a note saying, `I have stage 4 metastatic breast cancer. Who should I see?’ Another patient started to give advice and suggested she see a surgeon. I had to call and ask her to take the comment down. I could remove it myself, but I prefer to ask the person who posted to take it down themselves when possible.”

Oncologists Fear Time Constraints

Some doctors are worried about the time and costs involved in using social media. One comment reported on an ASCO blog summed up that sentiment this way: “The membership is on the edge already with time commitments and generally regard any additional time demand as toxic.”

Miller acknowledged time is a legitimate concern. “The Web can be seductive,” he said. “It is hard to turn off mobile devices. Some people feel they need to check every minute. I try not to do that. That said, it does take time, but not as much time as you think.”

Social media has saved him time in some respects, Miller added. In the past he used to spend time surfing the Web looking for articles and information. Now, through Twitter, he automatically receives updates on topics that interest him by following users who write about those interests. “Twitter helps me stay up to date on topics I find are important,” he said. “Not so much on clinical information, but on other topics; for example, federal policies regarding health IT incentives.”

Bailey said the costs for social media at Fox Chase are minimal, such as a flip video camera. Sometimes, she takes photos and videos on her cell phone, and people like the less-produced appearance of such content.

Aase encourages healthcare professionals to set goals for what they want to achieve with social media. Then, start small and gradually expand, he recommends.

The Mayo Clinic now offers social media resources to other healthcare organizations. On February 10, Mayo celebrated the opening of its new Center for Social Media, which already has more than 3 dozen members, including ASCO.

The network is comprised of organizations committed to discovering ways social media tools can be harnessed to improve healthcare, promote health, and fight disease. The site is a platform for idea exchange and collaboration, and offers an in-depth curriculum that covers both practical tips and professional ethics.

“We really believe in the positives of social media and its ability to transform healthcare. That’s why we made the investment and hired 8 staff members for the center,” said Aase.

He argues that social media should be promoted not just because it is inevitable. “It’s the right thing to do,” he said. “Because it is in the best interest of patients.”

References

1. Bennett E. US hospitals that use social networking tools. Found In Cache. http://ebennett.org/hsnl/. Published October 19, 2010. Updated January 23, 2011. Accessed February 22, 2011.
2. Fox S; Pew Research Center. Health Internet & American Life Project: health topics. http://pewinternet.org/Reports/2011/ HealthTopics.aspx. Published February 1, 2011. Accessed February 23, 2011.
3. “Cyberchondriacs” on the rise? [news release]. New York, NY: Harris Interactive; August 4, 2010. www.harrisinteractive.com/ NewsRoom/HarrisPolls/tabid/447/mid/1508/articleId/448/ctl/ReadCustom%20Default/Default.aspx. Accessed February 15, 2011.
4. How many hours per week do online physicians spend on the Internet for professional purposes? iHealthbeat. www.ihealthbeat. org/data-points/2010/how-many-hours-per-week-do-online-physicians-spend-on-the-internet-for-professional-purposes. aspx#ixzz1E8v7xzj6. Published April 22, 2010. Accessed February 20, 2011.
5. Blayney DW. Enhancing quality through innovation: American Society of Clinical Oncology presidential address 2010. J Clin Oncol. 2010;28:4283-4288.
6. Chretien KC, Azar J, Kind T. Physicians on Twitter [research letter]. JAMA. 2011;305(6):566-568.

Krystal Knapp is a freelance writer living in Princeton, New Jersey