Clinical Oncology in the 21st Century: Reflections on how Healthcare Providers Should Manage Their Public Personas on Social Media

Don S. Dizon, MD

Introduction

There is an ever-growing variety of social media platforms, which, depending on the reader, can be either exciting or not. For the enthusiastic early adopter, these channels offer a new experience and the chance to broaden social and professional circles. For others, the growth of social media is overwhelming, and with each new medium, they may become even less willing to explore any of them.

Patients Are Online and They Want Information About You

However, it is important that clinicians engage with social media primarily because we risk our reputations by not knowing what is being said, shared, and discussed about us online. In this article we will expand on these points and provide steps to help harness the Web and manage your online public persona.The Internet has become a staple of society, both on a local and a global scale. It has resulted in the formation of online platforms and communities, and has changed the ways we can interact with others. By some reports, there are almost 1.3 billion people on Facebook¹ and 255 million monthly active users on Twitter.² Estimates are that 35% of adults in the United States have gone online to diagnose a health condition,³ and other data suggest that patients might be choosing their healthcare providers based on online peer reviews.⁴ As a testament to this, online physician rating sites are widely available and appear to be frequently utilized.

The reach of social media extends to clinicians as well. In the 2014 American Medical Association Insurance’s survey of over 4000 US physicians, social media usage was noted by 79% of those under age 40, 62% of those age 40 to 59, and 53% of those age 60 to 69.⁵ Some physicians have recognized the shift from traditional models of information seeking and sharing, and actively discuss healthcare issues in a public way. Physician-led blogs such as Kevin MD (www.kevinmd.com) and 33 Charts (33charts.com) publicly discuss issues that affect those that work within healthcare.

In the oncology space, online blogs also have gained in popularity. Connection (connection.asco. org), the American Society of Clinical Oncology’s (ASCO) forum for the exchange of views on topical issues in the field of oncology, was recognized for its relevance and credibility with a 2014 Award for Publication Excellence (APEX) for site content. The blog authors write frankly about issues relating to oncology practice. Readers are invited to comment on the public blog posts, which often leads to authors answering questions directly from the reading public.

Figure. Curate Your Online Reputation

In recognition of these shifts in information gathering and sharing both amongst clinicians and the wider public, as well as the evolving working relationship between clinician and patient, we will suggest ways to cultivate and monitor your online persona and methods to approach using social media in your daily life.

These issues are relevant to oncology because information seeking has been changed by widespread access to the Internet. Indeed, some data show that among those who search for cancer information, 55% turn to the Internet as their initial source; only 25% went to their healthcare provider first.⁶

Protecting Your Online Reputation: The Digital Footprint and Beyond

However,clinicians must not assume that all information that’s available is accurate. In today’s Internet culture, anyone can write, post, or tweet an article, opinion, or otherwise. This access to “unfiltered” information can be misleading to patients, or even dangerous. A recent example concerned the dissemination of cancer information reported from “John” Hopkins University,⁷ which necessitated a point-by-point vigorous defense by the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University with input from its faculty.The digital footprint is the track that remains online after you have engaged in any activities on the Web. Conceptually, it is integral to your online reputation.8 It has both a passive and an active component, and understanding both is important.

The “passive” component is generated by identifying information from your computer or mobile device and by the way in which you access the Internet (eg, via the unique identifier attached to the computer you use to go online — the Internet protocol address—and your Internet service provider). Furthermore, passive data are recorded in your Internet browsing history (which records the sites you visit) and in the “cookies” that are collected by websites (cookies are small pieces of digital information that enable a previously visited site to recognize you immediately). Such information can be potentially collected, stored, and indexed online. While these pieces of virtual information (or “metadata”) are not easily linked with you personally, they could be.

The “active” component of your digital footprint is a record of what you write, blog, tweet, or post online, whether that is the pictures you post on a site like Instagram or the video you post on YouTube. If you’re not careful, who you are in your private life may blur with the image you are projecting as a professional. This has led for some to call for a separation of professional and personal personas on social media, such as Mostaghimi and Crotty’s concept of dual passports,⁸ in which two different identities are utilized—one strictly for a professional presence and the other for personal activities. However, others have argued that such a separation is not only impossible (there is no anonymity on the Web), but may be unfair to the patients we serve because it robs those we care for of the opportunity of knowing us as people, not providers.⁹

Whether clinicians choose to share their personal lives on social media sites is an individual choice. However, being cognizant that those reading your posts may indeed be your own patients is critical.

Curating Your Online Reputation

Taken together, the footprint is a key to your online reputation. Information shared online can be accessed widely and can give others an idea of who you are—both professionally and personally. Indeed, there may be very little distinction between them. If your reputation were solely under your control, it would not be worth worrying about. Unfortunately, it is not this easy—it takes work.Although you cannot exclusively control your online reputation, there are various ways to curate it, and we propose a framework of four “Ds” to explain these steps: (1) discovery; (2) definition; (3) dissemination; (4) defense (See Figure).

Discovery: All clinicians should actively monitor professional information available online; this can be done by performing an audit of what is readily available online about you, your practice, and your reputation, sometimes referred to as a “professional audit.” This involves conducting a Web-based search on the most common search engines (Google, Yahoo, Bing, and Ask). Search by your full name and various combinations of your name, along with your associated practice, institution, city, state, etc. Perform the same search on public websites that specialize in rating clinicians, professional society websites, patient-related websites, and content-sharing sites (Table 2). An audit will give you a sense of what information is currently available and an indication of what potential patients and colleagues will see when they search for information about you or your practice.

Table 2. Examples of Sites to Utilize for Personal and Professional Self Audits

Clinician Ratings

Ucomparehealthcare.com

HealthGrades.com

Vitals.com

RateMDs.com

Professional Societies

American Society of Clinical Oncology

American Association for Cancer Research

American Medical Association

American College of Physicians

Patient Communities

Smartpatients.com

Treatmentdiaries.com

Inspire.com

Content-sharing Sites

YouTube

Instagram

Pinterest

Networking Sites

Google+

LinkedIn

Doximity

MedStro

Facebook

Definition: After gathering the search results, perform a thorough analysis. Use the information to visualize something of a “narrative arc” that represents the sum total characterization, sentiment, and tone of the information. With a clearer definition, decide whether that story is accurate or not. If you are satisfied with what is presented, no further action is necessary, although you should continue to perform these professional audits online at least every quarter or so. In most cases, clinicians will discover content that is either inaccurate or, in their opinion, unfair, making further action appropriate.

Dissemination: Curating your online reputation means actively disseminating the information you want to be available. This can be done by creating a digital “biography” to serve as your preferred narrative and placing it on multiple platforms (listed in Table 2) to increase the likelihood that the information you want to be seen actually appears first in search engines. In addition to creating a personal narrative, engaging in social media networks is another means to disseminate your professional presence.

Table 3. Examples of Oncology-Specific Social Media Sites

Tweet chats

Health Care Social Media (#hcsm)

Brain Tumor Social Media (#btsm)

Every Sunday

First Sunday of each month

Breast Cancer Social Media (#bcsm)

Every Monday

Treatment Diaries tweet chat (#treatdiarieschat)

Health Care Leadership (#hcldr)

End of life/Elder care (#EOLchat)

Every Tuesday

Hospice and Palliative Medicine (#hpm)

Every Wednesday

Lung Cancer Social Media (#lcsm)

Medical Education (#meded)

Every Thursday

Blogs

American Society of Clinical Oncology (ASCO) Connection

connection.asco.org

ASCO Cancer.Net blog

www.cancer.net/blog

What We Talk About - Massachusetts General Hospital

Whenwetalkaboutcancer.org

Dr. Len’s Cancer Blog - American Cancer Society

www.cancer.org/ aboutus/drlensblog

Cancer Wise

www2.mdanderson.org/cancerwise

Facebook pages

Cancer Research UK

National Cancer Institute

American Cancer Society

Breast Cancer Awareness

Cancer Sucks

Engagement is a two-way channel and should be utilized as such to be as effective as possible. Each post, blog, or tweet may initiate a conversation, whether it is with individuals who think similarly to you or with those who do not. Maintaining professionalism must be a central and guiding tenet of online engagement. This is especially important when addressing critical comments. Take the time to craft your response, rather than to respond immediately or in an emotionally- driven, reactionary state. Post responses in a measured, thoughtful way in order to avoid situations associated with a greater risk to your reputation, such as posting when tired, angry, or inebriated.¹⁰

Despite these concerns, social media can provide meaningful insights and perspectives from individuals you would not necessarily ever have an opportunity to interact with otherwise. The interactivity of social media affords an opportunity to simultaneously educate yourself and others because conversations take place without barriers. Therefore, any exchange is open to those connected to you directly on whatever platform it takes place and by those who may have happened upon the exchange. In this way, social media represents the modern-day equivalent of the forum, where ideas can be discussed, dissected, and honed. Within the oncology space, specific examples of such forums on Twitter (tweet chats), blogs, and the pages of Facebook are listed in Table 3.

For clinicians involved in clinical research, an important caveat concerns the disclosure of information that may be protected by confidentiality agreements. While it is generally acceptable to post that a trial of interest is open and enrolling, be careful if responding to posts from others seeking information, clarification, or results. Avoid providing specific information (especially preliminary experiences) because such information is often protected and you can’t be certain that the person with whom you are interacting does not have a vested interest (eg, a financial analyst posting under a pseudonym).

Defense: The key to defending your reputation is to utilize the Web thoughtfully, which can reduce the risk that you will be embarrassed (or worse) by the content after it is published. There are numerous instances documented elsewhere that demonstrate how seemingly innocuous posts may carry hefty consequences, including termination of employment. Examples of social media experiences that resulted in negative and positive consequences are detailed in Table 1. Beyond thoughtful engagement, become familiar with the policies about social media adopted by your institution and profession, as well as with local, state, and federal regulations.¹¹

Table 1. Examples of the Use of Social Media in Oncology

Social Media

Platform Example

Facebook

Patient Disclosure in Facebook Posts

A Rhode Island physician found herself in legal trouble after she posted her clinical experiences attending in an emergency room [Doctor busted for patient information spill on Facebook: http://www.nbcnews.com/ id/42652527/ns/technology_and_science-security/t/doctor-busted-patient-info-spill-facebook]. Although she did not mention names or willingly disclose personal health information, a description of the injuries sustained by one patient was of sufficient detail that it allowed a third party to identify that patient. The physician was subsequently fined by the state and had her privileges terminated at that hospital.

Source: Conaboy C: For doctors, social media a tricky case. Boston Globe, April 20, 2011. Available at: http://www.boston.com/lifestyle/ health/articles/2011/04/20/for_doctors_social_media_a_tricky_case/?page=full.

Facebook Posts to Spur Action

Earlier this year, [Dr Thomas] Lee used Facebook to promote his practice’s annual fitness challenge. More than 100 people—patients, employees, and affiliated hospital staffers posted Facebook photos of themselves taking part in weekly challenges, like climbing 20 flights of stairs, and posted updates on their progress… Lee says, “People posted their numbers, and they kept getting higher and higher… The sense of competition was very motivational.”

Source: Haupt A: How doctors are using social media to connect with patients. Available at: http://health.usnews.com/health-news/mostconnected- hospitals/articles/2011/11/21/how-doctors-are-using-social-media-to-connect-with-patients?

Facebook and YouTube to Create an Online Community of Cancer Survivors

At the Mayo Clinic in Florida, Dr Herbert Wolfsen’s group aimed to establish an online Facebook community to help in recovery following surgical treatment for esophageal cancer. It has allowed connections between families who would never have met and serves as a resource to exchange medical information, share coping strategies, and learn more through links to educational material presented on YouTube. Dr Wolfsen also notes that many patients that met through Facebook continue to establish offline connections.

Source: Wolfsen H: Social media for survivors of esophageal cancer. Presented at the 2011 Annual Meeting of the American College of Gastroenterology, Washington, DC. Available at: http://download.abstractcentral.com/ACG2011/proofs/P3.html.

Twitter

Sharing Cancer-related Information

In a report on the use of Twitter at the 2011 ASCO annual meeting, several physicians cited it as an opportunity to contextualize the data being presented. This allowed for a less solitary experience and the opportunity to gain realtime feedback on data by following what others were saying in their tweets.

Source: Scientific meetings through the lens of Twitter. NCI Cancer Bulletin, May 2011. Available at: http://www.cancer.gov/ ncicancerbulletin/053111.

Declarations to Inspire or Influence Providers and/or the lay Public

For Dr Christian Sinclair (@ctsinclair), Twitter helps him “inform the public… and if there are patients or families who need this knowledge, [he] can help them because of this network.” In this example, Dr Sinclair describes the use of Twitter to help individuals connect with local hospices.

Source: Chen PW: Medicine in the age of Twitter. New York Times on the Web June 11, 2009. http:www.nytimes.com/2009/06/11/ health/11chen.html.

Highlighting Clinical Trials and Special Causes

Many organizations and physicians use Twitter as a means to highlight research interests and current clinical trials. However, one of the top social media stories from 2011 was the “bucket list” of 15-year-old Alice Pryne (#alicebucketlist). Faced with terminal lymphoma, she wrote about her own bucket list of things she wished to accomplish before she died, one of which was to encourage as many people as possible to become bone marrow donors. Her bucket list became an Internet phenomenon, and one of the top Twitter trends in oncology for 2011 and has increased the awareness of bone marrow registries worldwide.

Source: O’Neill M. “What is Alice’s Bucket List & Why Is it Trending?” Social Times on the web June 9, 2011. http://socialtimes.com/alicebucket- list_b65803.

* Although tweets tend to be informal and more personal than many other forms of communication, use of profanity or negative judgments about colleagues reflects poorly on any health professional regardless of whether the Twitter account is for personal or professional use.

*Table reproduced with permission from The Journal of Oncology Practice.

Table 4. American Society of Clinical Oncology’s Ten Tips for Social Media Interaction

1. Get involved. Take advantage of the greatest opportunity to disseminate credible information and influence both our peers and our patients.
2. Engage often. To increase your profile, provide input, respond to others, and create new content.
3. Always identify yourself. Everything is discoverable; anonymity is a myth.
4. Protect patient confidentiality and privacy. When activities involve your role as a clinician, make sure that anything done respects all relevant state and federal laws, including HIPAA.
5. Contextualize your activities. This enables online activities to be viewed in the appropriate context (ie, personal opinion versus institutional viewpoint).
6. Avoid impropriety. Ensure that any potential conflicts of interest are readily disclosed.
7. Give credit where credit is due. Respect copyright, always.
8. Professionalism is critical. Online conduct should reflect your profession at all times.
9. Separate the personal from the professional. Maintain professional distance between you and your patients, in person and online.
10. Be aware of your institutional guidelines on social media. If you have any questions, seek guidance.

Copyright© 2014 American Society of Clinical Oncology®. All rights reserved. Reprinted with permission.

Conclusion

Social media interactions require vigilance, particularly interactions that involve those directly affected by cancer. Despite a lack of a clinician-patient relationship, individuals with or directly interested in oncology will use social media to reach out to you (eg, for advice, clarification, or validation). Although a clinician may have a sense that he or she “should” respond to direct queries about care, be very cautious about doing so.12 Such activities may not be protected by personal malpractice insurance or supported by your institution, and may run afoul of social media guidelines.11 To this end, ASCO established 10 tips for engaging in social media that all clinicians should be aware of (Table 4).Even if you are not personally involved in social media, you are almost certainly being discussed and/or praised, criticized, and debated in social media circles. Because of this, it is important that you, as a clinician, explore and understand what information is available about you online and proactively protect your online reputation. By curating your digital footprint and thoughtfully participating in social media, you can establish an online presence and proactively curate your professional reputation online. In short, the world has changed. It is time that all clinicians understand this and actively engage.

ABOUT THE AUTHORS

Affiliations: Don S. Dizon, MD, is a medical gynecologic oncologist, department of medicine, Division of Hematology-Oncology, and is founder and director of the Oncology Sexual Health Clinic at the Massachusetts General Hospital Cancer Center, Harvard Medical School. Claire H. Johnston is a social media manager for a professional medical organization.

Address correspondence to: Don S. Dizon, MD; Massachusetts General Hospital Cancer Center, 55 Fruit Street, Boston, MA 02114; phone: 617-724-4800; email: ddizon@partners.org.

Disclosures: Dr. Dizon reports that he is deputy editor of UpToDate, an evidence-based clinical decision support resource. Ms. Johnston reports no conflicts of interest.

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