Perspectives from the Patient and the Healthcare Professional in Multiple Sclerosis: Social Media and Patient Education

Abstract

A diagnosis of multiple sclerosis (MS) is life-altering. Because the course of MS is heterogeneous, patients may face uncertainty in terms of long-term physical and cognitive challenges, potential loss of employment, and the risk of social isolation. Patients often turn to the Internet and social media for information about MS and its management, and to seek out fellow patients and support groups. Here, we examine the use of social media and the Internet among patients with MS, considering its impact on patient education. We consider the access that these conduits provide not only to other patients with MS but also to a wealth of disease-related information online. These themes are further illustrated with first-hand experiences of the patient author and her physician. We also explore the impact of the Internet and social media on the education and support of patients with MS from the healthcare professional’s (HCP’s) perspective, including opportunities for HCPs to promote disease education among their patients, and the advantages that arise from patients being better informed about their disease. The rise of the Internet and social media has changed the patient experience, helping patients to support each other, to educate themselves proactively about their condition, and to participate more actively in decisions relating to disease management than perhaps was the case historically. Funding Novartis Pharmaceuticals Corporation.

Patient and Provider Insights into the Impact of Multiple Sclerosis on Mental Health: A Narrative Review

“…In the absence of adequate social support, people living with MS can build an understanding community through a variety of in-person and online support groups, hosted by MS societies and/or patient groups [ 83 , 84 ]. For example, the National MS Society ‘Find Support’ page [ 85 ] offers multiple options to connect with others, including the MSFriends® helpline which people living with MS or their family members can call to connect with a volunteer living with MS [ 86 ].…”

Two Sides to Every Story: Perspectives from Four Patients and a Healthcare Professional on Multiple Sclerosis Disease Progression

“…With the rise of the Internet and social media, patients are also able to connect with each other more than ever before. Social media platforms allow patients with MS to share information from their personal experience, to give support and advice to each other, and to pass on their knowledge of the disease and its treatment [31, 32]. Nevertheless, despite the wealth of MS-related information and support available online, patients may remain unaware of, or not fully understand, the medical terminology used to describe different forms of MS.…”

“…Nevertheless, despite the wealth of MS-related information and support available online, patients may remain unaware of, or not fully understand, the medical terminology used to describe different forms of MS. It should also be noted that some sources of patient information may be biased, factually incorrect, or even harmful [32].…”

Developing a Digitally Informed Curriculum in Psychiatry Education and Clinical Practice

“…With increased access to technology, patients and their families have become proactive in obtaining information, rather than relying solely on education from their healthcare providers. Social media use also serves as an alternate avenue in obtaining medical information, including subscribing to interest groups and connecting to others with similar medical conditions [4,5].Millennial students and trainees in medicine have also developed proficiency and, even more so, preference for incorporating technology in their practice, learning, and daily lives [6]. However, they cite lack of guidance in education as a major barrier in incorporating technology fully in their practice [7].…”

“…With increased access to technology, patients and their families have become proactive in obtaining information, rather than relying solely on education from their healthcare providers. Social media use also serves as an alternate avenue in obtaining medical information, including subscribing to interest groups and connecting to others with similar medical conditions [4,5].…”