Patient Influencers: Understanding Cultural Inclusivity in Health Communication on Social Media

Literature Review

Method

This study conducted interviews with patient influencers of color (n = 18). Interviews were the appropriate method to explore these practices since little is published about patient influencers. This study was approved by the leading university’s institutional review board (#21-0472). Informed consent was obtained verbally before the interview, and permission to record was granted.

To help identify an initial sample of patient influencers, researchers contacted Health Union, a digital health company with the mission to build communities by connecting patients and healthcare partners, for example, serving as an intermediary between pharmaceutical brands and SMIs. Health Union provided an initial list of patient influencers to interview. The criteria for participation were being 18 years or older, being diagnosed with a disease, using social media platforms to discuss health, had 1000 or more followers, and collaborated with health brands. Next, the researchers invited ethnic and racially diverse patient influencers to participate in the study through email. Snowball sampling was then used to recruit more patient influencers to participate in the study. Snowball sampling is when study participants refer future participants for research (Parker et al., 2019). Participants were gifted $50 for their time and asked to refer another patient influencer.

This study is part of a larger project using an interview guide that included a range of topics such as influencer practices (e.g., use of various platforms), social media logistics (e.g., decisions about sharing content and tracking analytics), brand partnerships, and perspectives on patient influence. Ultimately, the purpose here was to understand how patient influencers of color approach cultural inclusivity. In total, 18 interviews were conducted via Zoom or phone: 12 females and 6 males. Eighteen interviews were deemed sufficient because of the saturation of data (Guest et al., 2006). The participants had been diagnosed with various conditions, including lupus, fibromyalgia, Parkinson disease, asthma, and HIV. Interviews were conducted during October through December of 2022 and January to June of 2023. The interviews ranged from 35 to 91 minutes, and averaged 48 minutes; interviews were recorded and transcribed verbatim.

Findings

This study examined the cultural inclusivity practices of patient influencers through the lens of the TPB. This theoretical framework offers insight into the attitudes and behaviors of patient influencers related to sharing health communication and “lived experience” (see Figure 1). The following section describes themes organized according to the constructs of the TPB: personal attitudes, subjective norms, and perceived behavioral control. Each exemplar quote is labeled with identifiers that the participants approved.

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Figure 1.

Themes identified according to the constructs of the Theory of Planned Behavior.

Discussion

This article sought to gain qualitative insight into the attitudes and behaviors of patient influencers of color through the lens of the TPB to better understand cultural inclusivity practices (see Figure 1). The current study is the first to examine patient influencers of color and adds to our understanding of how the TPB can help better understand cultural inclusivity in health communication.

This study identified themes related to the TPB constructs which give insight into cultural inclusivity practices. First, personal attitudes were investigated, that is, a patient’s overall evaluation of the behavior (Ajzen, 1985, 1991), which in our study was sharing inclusive health information/serving as a patient influencer for POC. One theme was identified pertaining to the personal attitudes construct: advocating for good health, not influencing for payment. Here, the patient influencers wanted to differentiate between influencer and advocate. Many felt as if sharing their “lived experience” and disease journey was for the purpose of advocating, not influencing others. The vulnerability and authenticity, for example, “my truth,” was important in building trust with followers. When the information source is perceived as credible and trustworthy, the content is then thought to be more valuable (Wang et al., 2021). Information, including health education and promotion, was considered advocacy by these patient influencers because it was part of raising awareness about a particular disease or condition. Despite some of the patient influencers working in paid partnerships with pharmaceutical companies, they felt as if those business relationships could potentially cause followers to perceive their content differently, perhaps less authentic or credible. This was a tension seen in the data. However, several mentioned these paid partnerships as opportunities to introduce their followers to different treatment options, and to be able to contribute honestly to the conversation of prescription medications. Being part of pharmaceutical marketing campaigns was seen as advocacy, raising awareness for other minority patients, and offering their “lived experience” with the medication. The patient influencers felt as if the paid promotion with pharmaceutical companies was part of being authentic since they took the medication. It’s important to recognize the potential risks associated with using patient influencers in pharmaceutical advertising. This form of direct-to-consumer marketing operates under ambiguous guidelines from the Food and Drug Administration, which can result in sponsored content that may be misleading or deceptive. The financial compensation for such promotional material can create a gray area, raising concerns about the authenticity and accuracy of information regarding prescription medications (Willis & Delbaere, 2022). It was important to the patient influencers that other patients of color see that they can live a high quality life despite being diagnosed with chronic disease. This attitude to illness affected their behavioral intentions, as patient influencers. For many ethnic and racial groups, there may be an absence of tailored health information that is culturally sensitive (Dutta, 2016), and that accounts for the psychological, socio-cultural, and structural factors (Briant et al., 2016; Leader et al., 2022) that influence attitudes and behaviors. Patient influencers wanted to share with others to help mediate shortcomings they experienced in the healthcare system. Inherently, these influencers speak from their own values and traditions, which is important among minority groups (Walters et al., 2020).

The next construct of the TPB examined was subjective norms. Subjective norms refer to how others would feel if we engaged in a particular behavior. One theme was identified: creating space for patients of color by challenging stigma. Here, patient influencers recognized that patients of color needed a space to connect with others and share culturally relevant information. The patient influencers interviewed wanted to facilitate a community for patients of color because of their experience with the healthcare system. This meant sharing their experiences, even when it was uncomfortable or made them feel vulnerable. It was through this vulnerability that their experience resonated with others and encouraged them to also share. This is culturally inclusive health communication (Alizadeh & Chavan, 2016). Many recognized the limitations of culturally appropriate health information and wanted to share their experiences to fill that gap for other patients experiencing the disease, specifically patients of color. It may not be that the “lived experience” is profoundly different, but the storytelling from patients of color who (presumably) speak from a position of marginalization resonates with followers who encounter similar challenges. The source here—a patient influencer of color—has the potential to influence followers’ attitudes related to chronic disease self-management; representation is critical in health communication (Dutta, 2016). Whereas the prevailing norms within a particular ethnic or racial community might suggest people do not openly share health information (Lohr et al., 2022), especially about certain diseases, the patient influencers in our sample took on these norms as a challenge to overcome; rather than limitations to their behavior, it spurred them to action. Showing success among patients of color was a primary intention among influencers interviewed.

The third construct, perceived behavioral control, is a patient’s expectancy that performing the behavior is within his or her control. One theme was identified pertaining to perceived behavioral control: empowering others by practicing self-management. The patient influencers in this study reported sharing day-to-day activities that showcased to others what it was like to be a patient diagnosed with a particular disease. Much of their content is related to self-management behaviors, for example, diet and exercise, medication adherence, and doctor–patient communication. This sometimes included chronic disease treatments like prescription medication. Sharing self-management practices allowed the patient influencers to exert some degree of control over their disease experience and their own disease narrative. The experience of living with chronic disease is often emotional in nature, and thus, it makes sense that followers develop affective attitudes toward the patient influencer, and make an investment in the influencer’s health journey. Affective attitudes are often more important than cognitive attitudes (Sheeran et al., 2017). The influencers want to share what they had learned along their disease journey and communicate that to others for the purpose of helping others in their community. The day-to-day storytelling of “lived experience” provides visual content for followers, showcasing how patient influencers manage their symptoms and daily activities; this serves as a “live demonstration” of self-management behaviors. Patient influencers try to communicate outcome expectations, and both the challenges to behavior and successes in managing symptoms. This type of vulnerability may influence followers’ affective attitudes, which are important in behavior change (Sheeran et al., 2017). Followers may create emotional connections with patient influencers due to the credibility of their disease journey and the content that is shared about managing the disease.

The patient influencers wanted to empower others by sharing authentic content about their disease. While not all the content shared related to the disease, patient influencers understood their relationship with their communities and subsequently their communities’ needs. The way patient influencers practice cultural inclusivity meets the needs of the patient influencers’ audiences, and creates engagement with the content and produces word-of-mouth communication. Because POC often encounter racism or other cultural barriers (Jaiswal & Halkitis, 2019), patient influencers wanted to share information that would help others when first navigating their health diagnosis. Understanding the barriers allowed for patient influencers to share solutions with their followers that offered unique experiences as patients of color. Patient influencers act as experts to help make information more accessible, help rebuild trust in the patient/provider relationship, aid in research, and help provide resources for patients. Providing access to information in a way that is understood and/or usable can relieve health inequity (CDC, 2022; Kreuter et al., 2007) which can help unburden the healthcare system, improve patients’ health literacy, and create more patient communities. When patient influencers of color engage in culturally inclusive health communication, they are actively challenging and addressing the historical and structural inequities in the healthcare system, not reinforcing them. The focus is on creating an environment where healthcare practices and messages are more aligned with the unique cultural contexts, values, and experiences of patients of color, which can lead to more positive and equitable health outcomes.

The themes identified here from the constructs of the TPB were examined, along with the corpus of interview data, in regard to cultural inclusivity. Intentions refer to the motivational factors that influence a behavior where the stronger the intention to perform the behavior, the more likely the behavior will be performed (Ajzen, 1985, 1991). One theme was identified in relation to behavioral beliefs: sharing to fill a gap in healthcare communication by building intentional patient communities. These patient influencers were focused on cultural inclusivity and creating content that was relevant and culturally appropriate for their communities of color. Their own experience motivated them to share their “lived experience” online with others, and by doing that, their communities have grown. People often seek information from others they perceive as being culturally similar (Saef et al., 2019), and thus, it makes sense that patient influencers’ communities have increased as other patients learn of the information available. The patient influencers all identified gaps in the healthcare system in regard to health communication, health education, and promotion. Their content then fills some of those informational gaps. Trust is often reserved for those in our social networks (Majerczak & Strzelecki, 2022). By sharing vulnerable content, patient influencers can connect with others and build intentional communities. By doing so, they can serve as a bridge between the healthcare system and patients. Patient influencers of color share knowledge and strategies for navigating a system that may otherwise be alienating or distrustful to them, ultimately increasing the likelihood of positive health outcomes. This is a proactive, not deterministic, approach. Patient influencers facilitate feelings of empowerment so that other patients might reach their full health potential, working to reduce health inequities. Patient influencers might be thought of as an interactive form of health promotion. Patient influencers share information for “others who look like me” and those who may be experiencing the disease and similar challenges in life; followers perceive the information to be trustworthy and credible because of the source (Saef et al., 2019) and the emotional connection forged through social media content (Sokolova & Kefi, 2020). Patient influencers of color create a foundation for health decisions that resonate with followers’ live experiences, and agency then allows patients to engage with their healthcare, making this an open-ended process rather than an inevitability. The features of social media allow for two-way communication where patient influencers can respond to followers’ comments and questions. Followers can understand through the patient influencers’ content what it’s like living with and managing a disease. The source is a patient who shares his or her “lived experience” and reflects the socio-cultural context that is unique to racial and ethnic groups (Dutta, 2016).

This study has limitations. The qualitative approach here is insightful, but more quantitative studies are needed so that generalizations might be made. The researchers used interviews, and the data is self-reported, meaning there’s no check on validity outside of repetition in responses. We used snowball sampling, and this recruitment strategy is limited in reach. Research should further investigate patient influencers who are communicating with specific patient populations who are difficult to reach. Patient influencers are already sharing health communication and building communities for the purpose of living well with disease. More research should be conducted on the influence of patient influencers in health education and promotion, and if these conduits of health communication could be used to connect with patients of color in specific disease categories.

Theoretically, this study adds to the literature on the TPB due to the qualitative approach taken here. Understanding the motivations behind patient influencers’ culturally inclusivity practices allows for insight into health promotion strategies that health communication professionals might implement. These influencers of color help dismantle systemic inequalities in healthcare by advocating for practices that are often marginalized or overlooked. In doing so, they contribute to a more inclusive and effective healthcare system, which benefits not only individual patients but also communities as a whole. There are many practical implications for this research. Public health officials should consider partnering with culturally inclusive patient influencers on future health promotion campaigns (Ehrlich et al., 2016). By serving as a bridge between the healthcare system and patients of color, these patient influencers could become very important channels for sharing information about health behaviors to underserved groups who value hearing messages about health from people who understand their experiences. They have become trusted and credible sources of health information for other patients. It’s not about reinforcing a specific outcome based on a preconceived belief but rather creating an environment in which diverse health needs are recognized and addressed. Health communication professionals could work toward building trust with patients of color not only by working with culturally inclusive patient influencers but also by understanding their reasons and motivations for engaging in culturally inclusive practices. Health interventions that work with the community to create space for POC and challenge the stigma associated with certain health conditions could be perceived as trustworthy by both patient influencers and their followers.