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Oncologists ’should be proactive’ in advising patients on social media benefits, pitfalls
Oncologists can help patients with cancer be savvier about social media, according to authors of a review published in Journal of Oncology Practice.
“Social media platforms such as Facebook, Instagram, Twitter and online cancer support groups are an emerging source of social support,” Danielle Gentile, PhD, health services researcher in the department of supportive oncology at Levine Cancer Institute at Atrium Health, and colleagues wrote. “However, oncology care professionals may be unfamiliar with how patients use social media related to their cancer diagnosis.”
HemOnc Today spoke with Gentile about how actively involved clinicians should be in helping patients use social media safely and effectively, what best practices oncologists should share, and the social media pitfalls that clinicians can help patients avoid.
Question: How actively involved should clinicians be in helping patients reap the benefits of social media and avoid the potential drawbacks?
Answer: It is wise for clinicians to take an active role, because patients are not likely to ask them about it. They should allow the patient to guide the conversation. Some patients will be interested in social media and will have used social media or online social groups, whereas others will not be interested at all.
Q: Should clinicians broach the subject or wait for patients to ask for their advice?
A: Clinicians should be proactive and raise the subject themselves. Clinicians can ask, ‘Have you ever used Facebook, Twitter, an online community or something similar to look for information about or connect with others with cancer?’ Once this question is asked, the clinician can assess the patient’s experience with social media and move forward from there.
Q: When they do discuss the topic, what best practices should oncologists share?
A: The article lists five potential benefits and five potential drawbacks of social media for patients with cancer. The potential benefits are promotion of patient engagement and empowerment, informational support, psychosocial support, potential to enhance the physician-patient relationship, and assistance in finding clinical trials and research opportunities. The potential drawbacks are that it is not a substitute for in-person social support and that it can spread misinformation, lead to financial exploitation, leave a person with information overload and compromise privacy. Social media is beneficial in that patients may be able to find someone of the same age, diagnosis and profession to confide in, as well as get social and informational support. However, they should always be cautious about misinformation and those who may have financial motives. This includes those who are advertising a ‘miracle cure’ that is not FDA evaluated or approved and are looking to profit from vulnerable patients. I would suggest clinicians find out if the patient is experiencing anything good or bad with social media and then dig in to what the patient is telling the clinician.
Q: Should oncologists direct patients to specific reliable resources and steer them away from nonreliable sources?
A: Definitely. ASCO has a social media resources page featuring a guide titled “Social Media 101 for Patients.” In terms of nonreliable sources, it is important to beware of those sites whose source or motivation cannot be determined. If the source offers some information but there is a link to click to buy something, then this is a pretty good indication that the source is not trustworthy.
Q: What social media pitfalls can clinicians help patients avoid?
A: The overarching thing that clinicians can do is be open and allow patients to bring up information on anything they are unsure about. Asking ‘Dr. Google’ is one place a patient can start, but the patient should ask an actual clinician who has a lot of training and experience and the patient’s best interest in mind. The clinician and care team will always be the best source in the end, so the patient can go to them before information overload happens. Regarding privacy, social media users should not post anything that would allow them to be identifiable. It is always wise to err on the side of revealing less.
Q: What should clinicians do when patients “friend” or “follow” them on social media?
A: My advice would be to not communicate directly over social media because it can compromise the relationship with the patient. The clinician can acknowledge the patient and say they are glad they reached out to them, but suggest the patient make an appointment to discuss any concerns in the office.
Q: Is there anything else that you would like to mention?
A: The most important takeaway is to have patients go at their own pace. Some patients are going to be very media savvy and want to connect with others and look for information. However, other patients will not be interested in social media at all, and this is OK, too. Patients should go at their own pace, and take a break from social media when needed. – by Jennifer Southall
Reference:
Gentile D, et al. J Clin Oncol. 2018;doi:10.1200/JOP.18.00367.
For more information:
Danielle Gentile, PhD, can be reached at Levine Cancer Institute Center for Supportive Care and Survivorship, 711 E. Morehead St., Charlotte, NC 28202; email: danielle.gentile@atriumhealth.org.
Disclosure: Gentile reports no relevant financial disclosures.