JMIR Publications

ABSTRACT

Background:

Social media in healthcare has many benefits, including the dissemination of health information,1 health promotion, and recruitment of clinical study participants.2 The COVID-19 pandemic has highlighted the benefits of the Internet and social media as tools through which individuals can exchange health information. While little is known about oncology patient preferences for social media platforms, particularly among minority populations, some studies have shown its use to be linked to the alleviation of patient stress and loneliness, increased feelings of self-efficacy and control of care, and efficient delivery of health information from health practitioners.3

Objective:

The aim of this study is to assess cancer patient access to and use of social media platforms and technology.

Methods:

Between March 2021 to June 2021, we administered a 16-item survey adapted from the National Cancer Institute’s (NCI) Health Information National Trends Survey (HINTS)4 to patients scheduled for a visit in the oncology department at the Outpatient Care Center (OCC) at UI Health. The survey was delivered by e-mail and administered in person. Respondents were asked to identify all sources used to learn about their diagnosis, their preferred information source, social media usage and preferences, and demographics. We used Chi-square to assess associations between categorical variables. This study was approved by the Office for the Protection of Research Subjects (OPRS) at the University of Illinois at Chicago.

Results:

Demographics of our sample can be found in Table 1. Respondents use several forms of information sources. The top three include: their doctor or healthcare provider (89.3%), Internet search engine (71%), and brochures and pamphlets (40.7%). However, when directed to choose just one source, 67.4% chose their doctor or health care provider, while 21.8% chose Internet search engine. The majority of respondents use a smartphone with Internet (77.2%), a home desktop or laptop with Internet (62.5%), or a tablet with Internet (61.2%). However, approximately one-quarter of respondents indicated that they use a mobile phone without Internet or a data plan. In exploring social media use and preferences, we found the majority of respondents have a social media platform (64.7%). Having a social media platform was associated with age (X2=18.7, p<.001) and sex (Fisher’s p=.001). The top 5 social media platforms used by respondents include: Facebook (61.9%), YouTube (48.9%), Instagram (28.9%), Snapchat (15.3%), and Twitter (14.6%). While respondents primarily used Facebook (22.5%), YouTube (21.5%), and Instagram (8.1%), to receive health information, few actually share health information with a medical professional (5.5%) and if they did, they primarily use Facebook (48.7%).

Conclusions:

Understanding how patients exchange health information is important to ensure access to accurate information and promote engagement with the healthcare team. We found that despite having social media platforms, our patient population does not predominantly use it as an avenue to engage with their healthcare providers, but rather to find health related information. Recent trends from the HINTS survey show an increased use of social media to exchange health information with healthcare providers.5 As social media engagement is linked to positive patient outcomes, employing social media interventions can help us improve the illness experience of oncology patients. While both cancer care providers and patients are increasingly using social media as a learning and sharing tool6, the exact information-seeking behavior of cancer patients has yet to be fully examined. In the current climate where medical misinformation is rampant on the Internet, healthcare workers should find innovative ways to disseminate evidence-based patient facing information utilizing the platforms most accessed by oncology patients. Our study highlights the need to further explore communication preferences to inform the development of tailored communication strategies to support oncology patients and their families.