Social media permeates virtually every aspect of a person’s digital life, and has for a few years now. Therefore, it is not surprising that patients are using social media as a major source of information, and an integral part of their healthcare research journey. Given that, it is imperative that pharmaceutical companies be present on social media to provide full and balanced information to consumers, especially since there is so much false and potentially dangerous misinformation out there.
To understand how social media channels can best benefit patients, it is important to understand the patient journey and the needs that drive people to use social media as a source of information.
Often when patients begin having symptoms, they will begin with a digital research journey, which includes searching social channels. Therefore, their initial discoveries often occur before or in parallel with a healthcare professional (HCP) visit. The subsequent HCP diagnosis then naturally triggers a second wave of research. Newly-diagnosed patients go online to seek more information about their conditions from both credible sources, and from people like themselves, as this patient’s emotional story can attest to the healing power of social support.
Over the past 20 years, social media has continued to play a significantly larger role in healthcare research and support. Among the most positive aspects of social media used in this manner is the ability for people with common afflictions to connect to fellow sufferers. Social media offers a community of people who are going through similar journeys to empathize, identify with, inspire, and provide support.
Social media is especially helpful for patients with chronic, recurrent disorders, such as psoriasis or arthritis. If patients continually vent their frustrations about their disorder to friends and family, they tend to fatigue their personal support system – which is why social media groups becomes a key source of patient support.
As patients long to share their stories and help others, they also become a significant source of information to those actively seeking their perspective. However, at times this information can be incorrect, unbalanced, and even irrelevant to someone whose condition is even just slightly different. While their symptoms may appear consistent, it’s often difficult for an untrained patient to have a clear understanding of what is on-label and accurate for their particular condition.
With current FDA guidance, pharmaceutical companies aren’t able to easily join the conversation to provide accurate, balanced information. Regulations mandate that, within a single social post, brands must provide accurate details on the benefits and risks associated with conditions and products. Given the character limits associated with many social communication channels, most pharmaceutical companies stay out of the conversation entirely. This means that when patients take to social media, the information they find may not necessarily be from reputable, accredited sources – and it may be marginally inaccurate at best, and significantly harmful at worst.
To illustrate the magnitude of unregulated misinformation in social channels, I was part of a recent review of comments on the drug Cialis on Twitter. We found that a full 49% of mentions were from illegal pharmacies that often include only benefit information, or incorrect information in their tweets. An additional 8% of comments were from individuals talking about Cialis and the benefits with no balance. This second group was highly concerning, because of the high instance of off label or unlabeled secondary benefits they may have incorrectly attributed to Cialis. In addition, 11% of tweets were about negative perceptions that ranged from actual adverse events (2%) to negative effects of long term use. In all, only 2% of the information about Cialis on Twitter was credible. (Note: 15% of the comments were not applicable.)
Healthcare research is a significant use for social media. One of the greatest gifts social media has given the world is connecting people with similar disorders. Social media offers a support community of people who are going through the same journey as the newly diagnosed patient.
It is more important than ever to add to the sources of credible, high-quality information on health conditions, their treatments, and drugs available. It’s crucial to find ways for pharmaceutical companies to be able to provide balanced and credible information on social media, so they can take part in the patients’ digital research journey.
This article originally appeared on PharmExec.com on May 12, 2017.
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