Netiquette for social media engagement for oncology professionals

The growth of social media in the last decade has revolutionized healthcare. Social media platforms have user-friendly interfaces, easy access and fast communication that allow individuals to share perspectives, content, insights and experiences [1]. In the field of oncology, the “rapid diffusion and adoption of social media have created a new frontier in cancer communication” [2]. This change provides an obvious forum for people with cancer and their caregivers to navigate the challenges from diagnosis to survivorship through online support groups and instantaneous access to information. Similarly, healthcare professionals increasingly use social media to communicate with one another, collaborate, and share information [2,3]. Finally, social media fosters multi-stakeholder engagement where clinicians interface with advocates and patients with impacts felt in the areas of guidelines, research, education and clinical care.

There are several popular social media platforms, including but not limited to Twitter, Facebook, YouTube, Instagram and TikTok. Closed Facebook groups, such as the Hematology and Oncology Women Physician Group, provide an opportunity for networking, education and emotional support [4]. YouTube and Instagram are more content-driven platforms. While there is a clear need for quality information to educate patients, in general, these platforms are less utilized by health care physicians at this time but have a lot of potential for future growth [5–10]. All of these platforms provide opportunities for both networking and professional development, as well as patient education and engagement (Table 1) [11].

Among health care professionals, Twitter is the most widely used and enables people to engage with others on a global scale for mentorship, professional support, education and advocacy [12–19]. The use of hashtags enables Twitter users to focus their searches and engagement in directions in which they are interested, reducing the ‘social media noise' and enabling a tailored experience.

Hashtag use on Twitter has been advanced with the Cancer Tag Ontology, which was developed collaboratively by advocates, clinicians and patients as a way to categorize and organize information being shared on social media (e.g., #ayacsm [adolescent and young adult cancer societal movement], #pancsm [pancreatic cancer social media]) [20]. Disease-specific hashtags are an attempt to create an efficient way to organize content and streamline information, as well as allow for online chats, which occur most commonly on Twitter [20]. For example, the #BCSM (breast cancer social media) tweet chat was initiated in July 2011 with the goal of providing evidence-based information and online support for anyone affected by breast cancer [21]. These chats have grown into a large community that is embraced by patients, physicians, advocates, health care organizations and others [21,22].

As healthcare professionals incorporate social media into their professional lives, the opportunities to engage with patients outside of the clinic setting expand [23,24]. Clinicians can be present on social media through institutional or personal accounts. Both approaches can result in direct interactions with patients, survivors and caregivers. For people with cancer, these engagements can help them access information in real-time, which can help guide both real-time and online conversations based on reliable data and evidence-based medicine. Alternatively, providers can access a unique opportunity to learn about patient concerns in a real world setting and may discover concerns (or interests) that do not necessarily come up in a routine clinical interaction. The American Society of Clinical Oncology (ASCO) encourages online participation, but provides tips for health care professional social media use as there are careful boundaries between active online participation and providing medical advice in non-practice settings [25].

This article covers how oncology professionals can create their social media identity, best practices for engaging both in patient and caregiver spaces and professional communities, and how to address antagonistic and inappropriate behavior on social media. While it is critical to maintain patient privacy, confidentiality, and appropriate boundaries of the patient–physician relationship, there remain challenges in defining the nuances of professionalism on social media that are outside the scope of this discussion. Ultimately, it is hypothesized that social media use in oncology will only continue to expand and as such, health care professionals have a unique opportunity to lean in and embrace these changing dynamics of communication in oncology practice.

Building a professional identity

The first step for establishing a social media presence is to understand the purpose and goals of entering this space (Table 2). Different social media platforms have different populations of users and functionality, so it is important to explore the various channels of interest as to better understand the audience that gathers in those spaces. Spending time observing (or ‘lurking’) can help to acclimate to how people gather and interact and allows the potential user to gauge their interest and comfort level. If a more visual platform is preferred, the user may be inclined toward Pinterest or Instagram; if the goal is to gather quick snippets of information, TikTok or Twitter might be of more interest.

The professional use of social media also calls for transparency. Once the ideal platform is identified, it is recommended that a social media ‘handle' or username accurately reflects one's professional identity, including name and credentials, which helps build credibility. Most channels allow the input of a brief, descriptive biography, which should also indicate specialty, employer (if applicable), and other professional highlights, such as national organization leadership positions. If posting as an individual rather than as a spokesperson for the institution, an appropriate disclaimer should be used. Finally, disclosing any potential conflicts of interest (COI) in the biography is indicated. This transparency is important in building trust.

It is important to understand that merely opening an account does not automatically build a social media presence. Establishing a relevant presence takes time and is dependent on how active the user is on a channel, who they interact with and the content they post. An interactive, respectful social media presence can help to establish a physician as a thought leader and reflects positively on the individual and the profession. However, several caveats are important to keep in mind: on public social media spaces, posts are discoverable, even after deletion. Everything posted online should be considered permanent. Posts are public and may be accessed by anyone, even if intended to be read by colleagues. As such, it is important to post thoughtfully and intentionally. Clinicians should also be mindful of patient privacy, as patients may be identified even without disclosure of protected health information [26]. ‘Post the pearl, not the patient' has been proposed as a way to discuss important teaching points without violating patient privacy [27].

In building an identity on social media, it is important to understand what can be shared in addition to professional or medicine-related topics. While many refrain from sharing any personal information on social media for this fear as well as protection of privacy, others feel that sharing a small amount about family, hobbies, or other nonwork-related activities helps to humanize medicine and allow others to see the multi-faceted nature of physicians and their normal, regular lives outside of the hospital [28]. There is never an obligation to share this type of information, and it should be done based on personal preferences and goals for a social media experience.

Engaging in patient spaces

There are many disease-specific forums on social media, including cancer-specific patient communities. On some platforms, these communities are closed (e.g., on Facebook) with membership restricted by account administrators. Engagement in these groups should not be attempted under anonymity or alias. A healthcare professional should always seek permission to join a private patient group if not directly invited by the group's administrator or moderator.

Some communities are open forums, such as the cancer social media chats that occur regularly on Twitter. #BCSM was the first cancer-specific community established on Twitter and was founded in July 2011 by two breast cancer patient advocates, Alicia Staley and the late Jody Schoger [22]. The weekly chats initially served as a forum for patients to discuss various aspects of the care experience. Over time, they attracted multiple stakeholders including physicians, researchers, caregivers, and the media. Although it is unclear how many physicians engage in patient spaces as a whole, there has been a steady increase in physician use of the #BCSM hashtag and #BCSM tweetchat participation over time [22].

In part due to the success of #BCSM, other communities initiated regular tweet chats focused on brain tumors (#BTSM), gynecologic cancers (#GYNCSM) and lung cancers (#LCSM) among others. These virtual communities provide opportunities for people impacted by cancer to meet beyond the borders of their cancer center, providing a means to find support and gather information [29]. Patients often candidly exchange tips and tricks on dealing with side effects, share clinical trial experiences, and frequently discuss the availability of diagnostic testing to find targeted therapies. In these ways, the social media discussions are a means for advancing patient education and potentially even medical treatment. Individuals with cancer frequently step into an exam room and feel as if they lose their personal identity, often becoming ‘the patient’ – reduced to a set of symptoms and side effects. Within these virtual communities, they can bring their whole selves and discuss not just their cancer, but their lives and cancer's role within their lives. For example, Thomas et al. reported findings from a #GYNCSM tweetchat that focused on survivorship needs among women diagnosed with ovarian cancer [30]. This qualitative study highlighted the heightened sense of vulnerability after completion of treatment, suggesting a need for additional post-treatment resources. Cutshall, et al. reported findings from a #BTSM tweetchat involving brain tumor stakeholders that focused on advance care planning (ACP). The study identified three themes: attitudes around death and dying and a general discomfort with these conversations; the importance of the patient voice in ACP; and the concern that discussions should be brought up at the ‘right' time [31]. These examples highlight the importance of open patient discussions and the valuable information that can be gained by clinicians when they are exposed to and listen to patient voices in the online space.

Physicians who participate on social media can benefit from patient engagement, using the space to gain more insight on the cancer experience. This is possible because patients are often less guarded than they might be in the context of the medical visit – a place where the physician controls the environment, and often the conversation. Therefore, these communities provide a timely opportunity to educate about cancer topics, to inform on new findings, and to correct misinformation [11]. Engaging in patient communities requires a mutual understanding that every member adds perspective and value. As such, it is important for clinicians not to presume that their role is to lead the discussion or to be the expert.

When engaging in these open spaces, clinicians should begin by introducing themselves to members and be candid about their objectives. For example, if the clinician is interested in learning about the patient experience, they should tell the community how they expect that to influence their perspective and practice. Being transparent about goals for participation will foster communication and allows for open, honest relationships. It is critical to understand that many patients who participate in online communities are also experienced advocates who support others, actively follow and participate in research, and drive policy changes. They are experts in living with their disease. Online communities only thrive when there are high levels of trust, and a key component of trust is transparency.

Another important aspect of engagement is to distinguish education and support from the provision of medical advice. Within the context of patient communities, healthcare professionals should not join to be ‘everyone's clinician'. In the absence of an established doctor–patient relationship, providing specific medical advice to any one question is not appropriate, and advice given within an established patient-physician relationship should be reserved for a clinical setting with appropriate privacy protections in place. Online responses should be more general, drawing from the literature, guidelines, or other reputable sources. At times, a more direct statement such as “because you are not my patient, I cannot tell you which medication would be best for you…” or “that is a question you should ask your oncologist” may be necessary.

In the event that an established patient in a clinician's practice is participating in the online community, communications regarding any aspect of their medical care should not occur due to concerns around protected health information (PHI); such communications are best re-directed off of social media and toward medically appropriate forums, whether an in-person or telehealth visit or communication via patient portal. Finally, it is important for the clinician to disclose if their statements reflect an evidence-based answer versus an opinion.

Engaging in professional spaces

The use of social media as a tool to engage with other healthcare professionals is another helpful aspect of this medium. Multiple papers have been published on the value of social media for professional development. Markham et al. describes the multitude of career growth opportunities that may arise from a social media presence, such as networking (including use of Twitter at medical meetings) and participation in Twitter journal clubs and online case-based discussions and tumor boards [11].

Twitter remains a favored forum for the online engagement for healthcare professionals. For many professional meetings, there are ‘Social Media Champions' who share highlights of the conference though online platforms, largely Twitter. These professional advocates emphasize key points of the meetings including groundbreaking research, networking opportunities and potential spaces for collaboration. ‘Champions' can curate important information for peers who are unable to attend the meeting but want to stay up to date on the latest knowledge within their specialty in short, easy to digest summaries.

In a 2017 article published by Pemmaraju et al., the authors suggest best practices for the use of Twitter at medical meetings, but these ‘rules of engagement' apply to the use of social media in professional spaces in a broader sense as well [32]. Oncology clinicians should ensure their professional identity and profile have been established before engaging and must remember that there are multiple stakeholders in these spaces, not only physicians. While certain online professional spaces may be private (i.e., have specific membership criteria), the vast majority are public spaces where anyone is free to engage.

Regardless of the space, it is important to join with an openness to actively listen to other opinions. In the same vein, it is crucial to maintain the ability to politely and professionally disagree or debate clinical issues. It is often easy to mistake tone or meaning in short online communications, so particular attention must be paid to these. It is important to understand that even in professional communities and conversations, information shared online can be viewed by patients, trainees, and other communities. It remains unclear how negative or aggressive conversations between colleagues online may impact these groups and/or physicians' reputations with colleagues and patients, but it remains a best practice to always maintain professionalism.

Dealing with online harassment & antagonism

While tone can sometimes be misinterpreted in written communications, there are instances where interactions can become antagonistic. Trolling is a heightened form of social media hostility characterized by intentional, frequent displays of disruptive behaviors meant to aggravate and exploit others, often for personal amusement [33]. Narcissism and an enjoyment of manipulation are personality traits linked to trolls; they want to cause someone to become angry or upset and relish in doing so [34]. Some research suggests that discussions become increasingly negative as they become longer and have more engagements, which may encourage trolls to continue pushing the conversation [35].

It is important to distinguish between harassment and disagreement. Constructive disagreement requires participants remain open to persuasion and make structured points with evidence that may then help move closer to consensus on a certain topic. In medicine, clinicians do this routinely and although there may ultimately be a lack of agreement, it is possible to end such conversations respectfully. Online conversations beginning with a negative tone may be more likely to deteriorate into trolling, especially with more exposure to trolling comments and shorter time between comments/posts (<5 minutes) [36]. If a conversation seems to be heading down an unproductive path or may be perceived as harassment, consider stepping away.

While it is not possible to prevent online harassment, there are ways to mitigate and discourage such interactions. After all, a megabyte of prevention is worth a gigabyte of hassles. Recognize if a topic is controversial and whether adding a comment will add to a conversation or will only ‘stir the pot. This tactic is not meant to censor; rather, posting deliberately will make the clinician better prepared possible responses. If (or when) people who engage disagree or post in a way that could be construed as an ‘attack', evaluate who is posting; those posting anonymously are more likely to be trolling, while those with a professional handle may be more likely to engage in professional discussion. Carefully choose who to engage with, ignoring those seeking to inflame the discussion and launching attacks. If conversations become too uncomfortable, be prepared to walk away. Finally, make use of reporting measures in the social media channels to mute those harassing you, or if circumstances worsen, block them completely from any interactions. Some tips on responding to trolls are shown in Table 3. If the interactions are too distressing, it may require changing privacy settings or reporting abusive behavior.

Privacy settings on social media platforms allow the clinician to control who can view their posts. On Twitter, these settings can limit followers and engagement, but it may be helpful at times for a break from uninvited commentary. Instagram functions similarly, making it easy to switch an account from public to private. On Facebook, default settings are important. Limiting access to posts to friends or connections only rather than the general public can help lessen the potential exposure to trolling. For Facebook Groups, administrator settings can help ensure privacy, and groups can be ‘hidden’ – this decreases the potential for trolling but may also make it harder for new members to join.

It is possible to keep an account public and lessen exposure to identified troll accounts. On Twitter, use of the blocking feature prevents the target account from following or viewing posts, but the troll is notified that they have been blocked if they try to access content. Muting prevents the clinician from seeing hostile comments but doesn't notify the troll that they have been muted, so is less openly hostile. Accounts can be reported to Twitter support for abusive or hateful content or if an account is impersonating you or others. Facebook and Instagram also have community guidelines and instructions on how to mute, block, or report problematic accounts, posts, comments or keywords [37,38].

There is small, but not nonexistent, risk of doxxing on social media – where someone seeks private, personal information such as a social security number or private photographs, and shares this widely with the goal of harming the target [39]. There is not a perfect system to determine why people are doxxed or what factors might predispose people to being targeted in this way, and there is no link to number of likes, shares and followers a person may have.

Facing trolling, harassment or other forms of cyberbullying on social media can have a significant impact on mental health. Joining a community where there are many established medical experts with large followings can bring about imposter syndrome, something too often dealt with in medical training and careers [40]. In a study of resident trainees, nearly half experienced some form of cyberbullying in a 6 month period, and this led to increased mental strain and decreased job satisfaction [41]. With this in mind, it is important to set boundaries for when to engage and disengage with those who provoke or antagonize on social media platforms. Engaging with colleagues and others online should provide support and a productive, positive experience, and it is appropriate to block or mute those who make this a challenge or step away from social media for a period if it is becoming an unpleasant space. There are also resources available at most institutions for assistance with trolls, harassment or other social media concerns if needed.

Conclusion

As demonstrated, there are benefits and risks to active participation in healthcare social media communities. When opting to take advantage of the rich opportunities available on these platforms, it is important to weigh the pros and cons and make educated decisions about how, when and where to engage.

A clinician's social media identity consists of a complex combination of personal, social, cultural and career components, and a standard of professionalism is paramount [42]. Similar to in-person conversations, there will be disagreements on best practices, trends in the field and other topics, and it can be easier to fall prey to unprofessional speech in an online setting. It is important to always remember that everything on the internet is permanent, and even deleted posts can find a way to resurface. Therefore, it is crucial that as physicians, critical thinking goes into what is posted with each interaction, and to use professional and kind speech [43]. Give others the benefit of the doubt when tone and intention are not clear, and it is important that there can be long-standing professional implications if there are significant missteps [44].

As in all aspects of medicine, an active social media presence can impact mental health. Building a strong presence takes time and energy, and this can increase burnout, though not directly studied amongst medical professionals [45]. Doxxing or harassment from trolls can also lead to significant consequences for mental health.

Despite these potential negatives, social media also offers mental health benefits that counter each of these concerns. Private groups for physicians or healthcare professionals, often organized by specialty, location or other interests, can offer a space to connect with colleagues, develop networks and grow friendships. These can be both professionally rewarding through opportunities for collaboration, speaking engagements and mentorship, as well as personally satisfying by creating connections with other physicians based on shared nonmedical interests. These semi-private spaces can connect physicians who feel geographically or philosophically isolated and can provide a space for discussions and problem solving with others who may have had similar experiences.

Public spaces can offer very different, but valuable benefits to clinicians as well. These spaces allow for engagement with patients and allied providers, offering opportunities for education and perspective broadening for all participants. Platforms such as Twitter can be utilized to stay up to date on the newest medical advancements and can offer opportunities for deeper investigations through virtual ‘journal clubs' and moderated discussions. Importantly, these public spaces can also serve as a platform used to call attention to inequities in medicine, including racial or gender disparities in the delivery of healthcare or research, as well as bringing to the foreground professional inequities, such as all male expert panels (‘manels').

Remaining thoughtful about the goals on social media can help determine the best way to utilize this powerful tool. Successful management of a social media presence includes being mindful of the risks and benefits and balancing time spent on social media with time away from the screen. Clearly, there are many ways to engage over social media, and different spaces offer different benefits. Finding the space that is ‘right sized' and fulfills personal needs should be the goal of engagement.

Future perspective

It is anticipated that the increase in social media use among healthcare professionals will continue over the next decade and beyond. As new technologies and platforms become available, users will need to adapt to different environments and incorporate the latest changes in information dissemination to maintain a presence in online communities. In addition, more research is warranted to better understand the impact of professional social media use on providers themselves and engagement with patients in online platforms on providers, patients and outcomes.