Their comments are highly inflammatory, written to provoke and are downright mean-spirited. Many studies indicate that the ability to hide their identity contributes to lack of civility in their comments. In Dan’s recent blogpost about responding to negative comments, he encourages hospitals to build a registration mechanism to avoid such trolls. They are raw, unchecked and unvarnished. So what can we possibly learn from such nasty creatures? The power of anonymity.
In a recent statement from the American Society of Clinical Oncology (ASCO) dealing with care for patients with advanced cancer, two key points make a case for considering incorporating anonymity for online health communication–a call for candid conversations and empowering patients online.
Encouraging candid conversations
The ASCO statement encourages candid conversations, but admits, “emerging evidence suggests that, too often, realistic conversations about prognosis, the potential benefits and limitations of disease-directed therapy, and the potential role of palliative care, either in conjunction with or as an alternative to disease-directed therapy, occur late in the course of illness or not at all.”
They add, “Oncologists may not feel comfortable or prepared to engage in such conversations with their patients and their patients’ families. … Programs to improve oncologist communication skills have expanded, but incorporating those skills into training programs and continuing medical education is mixed.”
Using the web to empower patients
ASCO’s statement advocates online solutions: “…Patient advocacy group websites could be helpful in empowering patients to initiate realistic discussions of care options by providing more detailed information on prognosis and likely outcomes from standard interventions for common incurable cancers. In addition to discussing potential treatments, disease-specific sites also could advise patients with incurable cancer to discuss advanced medical directives and/or hospice care with their families and physicians.”
A call for social media
In a recent article in Oncology Times, author Glenn L. Laudenslager IV, president of Charge Ahead Marketing LLC and former marketing director for the Massachusetts General Hospital Academy and Reed Medical Education, points out that the ASCO statement makes a strong case for physicians to become educated about using social media: “The delicate and personal facets of the palliative care conversation make it an ideal talk to begin in social media…” He adds, “In some cases, it’s the unvarnished, harsh answers people seek. In some cases, it’s the freedom to seek information anonymously and be honest without desire to be known.”
A case for anonymity
It seems to me that there is a case to be made for hospitals, especially those with cancer centers, to consider their role in initiating realistic conversations and providing an online venue where unvarnished information can be shared and discussed.
I’m certainly not suggesting that you invite trolls to comment on your site, but knowing that people are more likely to share when they can do so anonymously makes a case for selective anonymity.
Although registering to post comments is a good safeguard, there may be certain times in certain venues when allowing anonymity better serves your community. Hospitals should consider developing a safe place where people with incurable cancer can be anonymous, not because they desire to cause pain to others, but because they desire complete honesty–and that can sometimes be painful.