by: Laurence Woollard, Hemophilia Influencer
© PEN (Parent Empowerment Newsletter), LA Kelley Communications, Inc.
The unparalleled, seismic societal shifts over the past year have made many of us readjust in ways we’d never imagined. As I write this, here in the United Kingdom we are facing yet another national lockdown. Strict physical distancing has meant that people are using digital social networks to interact and share information on a historic, extraordinary scale. According to We Are Social, by October 2020, the number of people using social media worldwide surpassed the 4 billion milestone, with an average of 2 million new users joining every day.1
While the environment created by the pandemic has bred many falsehoods on social media from so-called armchair epidemiologists, the rise in online traffic from housebound, captive audiences has also inspired more entrepreneurial hustle. Social media is unique; it places people at the center of a vast network, and shifts power by allowing anyone to become an “influencer.” This relatively new phenomenon has grown with the mania for online video content, and YouTube is the dominant platform. YouTube influencers, through their informality and authenticity, can be seen as models for observational learning: they have the potential to guide or change the beliefs of their followers. One of the standout “heroes” during the pandemic was Joe Wicks, known as “The Body Coach,” who had over 75 million views globally of his daily “PE with Joe” fitness sessions on YouTube.
For many people in the bleeding disorder community under lockdown, decreased physical activity may have negatively impacted their joints and muscles.2 In response, patient advocacy groups have been forced to adopt and improve virtual operations and e-learning approaches using social media to promote their members’ well-being. For example, the European Haemophilia Consortium (EHC) hosted its physical activity campaign #thisway through monthly Facebook live sessions with a specialist physiotherapist.
Social distancing has put a strain on the mental health of many individuals. For young adults in particular, the World Health Organization (WHO) has suggested that staying connected with peers through social media can help them remain positive and challenge mental health stigma. The explosion in popularity of the entertainment-based platform TikTok—with over 30 million monthly users in the US alone—has demonstrated the potential not only to convey important health information, but to address these aspects of the pandemic as well.3
Even pre-COVID, more and more people were using social media to gain knowledge and share their health experiences.4 As a result, social media has been promoted as an inexpensive means for patient education, to enable and empower consumers in their health and healthcare-related interactions.4,5,6 This is particularly significant for people living with chronic conditions, where management and care can be self-guided, fostered through online peer-to-peer interaction and validation, or assisted by a facilitator or healthcare professional.4 The number of physicians involved with hemophilia on social media in a professional capacity is increasing, championed by the likes of Professor Mike Makris in Sheffield, UK, who has become an influencer in his own right. Professor Makris believes, “Information is no longer a privilege and the time when patients are more up-to-date and better informed than their doctors is already here.”7
Feeling empowered in decision-making about one’s health can play an important role in supporting people as they seek positive health behavior and lifestyle change. Yet, a high level of patient participation and engagement is essential. Preliminary studies have shown that social media interventions lead to some positive effects on the health of people living with chronic diseases, including promoting self-care and self-confidence, as well as offering psychosocial benefits, but these results are limited.4,6 Similarly, the reporting in hemophilia is scarce, although a recent attempt was made to increase awareness of von Willebrand disease by targeting women in their reproductive years on social media, and inviting them to participate in an online self-assessment tool to recognize abnormal bleeding symptoms.8
Although social media is now viewed as a universal communication channel, there is a risk of reducing health information access for those who are not technologically connected. About 22% of the UK’s population lack basic digital skills,9 and 31% of rural US households are still without access to broadband internet.10 The pandemic stands to make the impacts of digital exclusion worse for the millions of people affected, and the socioeconomic disadvantaged will be hit the hardest. What’s more, engaging with eHealth (for example, health information from electronic sources) requires a skill set, or literacy, of its own to appraise and apply the knowledge gained in addressing and solving a health problem.4
Providers who design social media interventions or campaigns must be mindful of the different population segments in the patient community to ensure equity of access to educational opportunities, and not just target those who are more socially mobile and tech- and eHealth-literate. There is also still a strong need to examine not only how to tailor and deliver more effective and responsive patient education through social media, but also how to assess its impact on patient health outcomes, especially in the “new normal.”
Laurence Woollard is founder and director of On The Pulse, an independent consultancy partnering with global healthcare providers and multi-agencies to drive patient education and choice in hemophilia and rare diseases. Laurence has hemophilia and can be reached at @TheWoollard on Twitter.
1. We Are Social, Digital 2020 (2020), datareportal.com/reports/digital-2020-october-global-statshot 2. H. De la Corte-Rodriguez, et al., “What COVID-19 Can Mean for People with Hemophilia Beyond the Infection Risk,” Expert Review of Hematology 13, no. 10 (2020): 1073–79. 3. C. H. Basch, et al., “COVID-19 on TikTok: Harnessing an Emerging Social Media Platform to Convey Important Public Health Messages,” International Journal of Adolescent Medicine and Health, Aug. 10, 2020. 4. L. Zhou, et al., “Harnessing Social Media for Health Information Management,” Electronic Commerce Research and Applications 27 (2018): 139–51. 5. M. Stellefson, et al., “Evolving Role of Social Media in Health Promotion: Updated Responsibilities for Health Education Specialists,” International Journal of Environmental Research Public Health 17, no. 4 (2020): 1153. 6. H. Korda, et al., “Harnessing Social Media for Health Promotion and Behavior Change,” Health Promotion Practice 14 (2013): 15–23. 7. M. Makris, “Twitter and Haemophilia,” Haemophilia 26, no. 2 (2020): 181–82. 8. E. Reynen, et al., “Let’s Talk Period! Preliminary Results of an Online Bleeding Awareness Knowledge Translation Project and Bleeding Assessment Tool Promoted on Social Media,” Haemophilia 23 (2017): e282–86. 9. H. Holmes, et al., “‘Pay the Wi-fi or Feed the Children’: Coronavirus Has Intensified the UK’s Digital Divide,” University of Cambridge (2020), www.cam.ac.uk/stories/digitaldivide 10. A. Ramsetty, et al., “Impact of the Digital Divide in the Age of COVID-19,” Journal of the American Medical Informatics Association 27, no. 7 (2020): 1147–48.