Voices of the "99 Percent": The Role of Online Narrative to Improve Health Care
Perm J 2016 Fall; 20(4):15-224
Context: Communal blogs facilitate online narratives by providing opportunities for individuals to co-construct meaning and to engage in discussion about lived health experiences.
The Era of Health Reform
On March 23, 2010, US President Barack Obama signed the Patient Protection and Affordable Care Act,1 passing health insurance reform into law. This legislation followed years of rising premiums, declining health and health care quality, and increasing unemployment, which led the US health care system to the brink of collapse.2 According to the Organization for Economic Cooperation and Development (OECD), the US spends 250% more on health care per capita (16% of the US gross domestic product in 2007)2 than the average of all other OECD countries.2,3 Despite this spending, Americans have some of the worst health indicators in developed countries: the second highest prevalence of chronic diseases, the highest rate of obesity in all OECD countries, and higher infant mortality rates than the OECD average.3 The US is an outlier in terms of high expenditures and low life expectancy at birth (in the bottom third compared with other OECD countries). These growing health and economic concerns positioned health care as a timely political issue.
Health and health care emerged as key factors in the Occupy Wall Street movement. The goal of the movement was to raise awareness about income inequality and the corporate influence of the wealthiest 1% of Americans on government.3 The movement captivated national attention in early fall 2011; however, news media had difficulty discerning the goal of participants, especially without the emergence of a clear leader.4 To address this ambiguity, thousands of bloggers turned to Tumblr, a popular blogging Web site, to share their stories, to demand change, and to raise awareness about the movement. Tumblr encourages users to form online communities on the basis of similar interests as a means to communicate with others and to build support systems. The Tumblr blog “We are the 99 percent” amplified the voices of Occupy Wall Street protesters. The blog is a dynamic artifact, telling the story of the movement’s apex, while continuing to serve as a place for individuals to describe their lived experiences. Many posts expressed frustration regarding health care and the difficulty of attaining quality medical care in the US.
Although scholars studied the Occupy Wall Street movement on other social media sites, little research explores the “We are the 99 percent” Tumblr.4-6 The “We are the 99 percent” Tumblr received more than 100 posts every day during its peak.7 Although the platform remains anonymous, the creators of the Tumblr blog, Chris and Priscilla Grim, required bloggers to handwrite their story on a piece of paper and to show some portion of their face.7 In a short period, Occupy Wall Street focused national attention on the issues of health and health care through the use of social media.8
Narrative Storytelling Online
Storytelling is a powerful tool capable of inspiring change within the health care field.9-13 Online narrative in public health offers a novel opportunity for individuals to communicate about health. The expansion of narrative-based educational and promotional materials to online platforms is based on the success of personal stories in disseminating health information. These personal anecdotes serve as models of behaviors that can impact health.14 Online narrative provides communities with opportunities to co-create health narratives and allows individuals and experts to bear witness to everyday lived health experiences.15-18 Engaging with online storytelling platforms such as Twitter, Facebook, and Tumblr allows health care practitioners to monitor and understand the health and health care needs of the public beyond the traditional health care setting, furthering the opportunity to address patient-physician gaps.19
Health communication campaigns employ online narratives as a form of persuasive communication to motivate health behavior change.14,20-22 Experts suggest that readers of personal stories may be able to draw parallels with their lives, eliciting intellectual and emotional engagement.23 In practice, the use of narrative by health communicators is often less “true story” and more script, in which health care practitioners craft the “right narrative” to increase the chances of behavior change.14 Scholars argue that narrative-based online storytelling equals that of didactic education in effectiveness of imparting information,22,24-26 offering real-world examples to supplement concrete data.27
The constructed narratives of health campaigns may not be as effective as true personal narratives. Individuals searching for organic experiences may avoid messages from campaigns and experts, in favor of online discussion groups where members create a community of support on the basis of common experiences.21 Studies show that in medical settings, individuals seek personal experiences from previous patients.20 As a result, storytelling provides patients with a means to understand their illness through communication with others who faced similar diagnoses.28 Patients search for narratives from those who have experienced comparable health situations. In a qualitative study of pregnant women, Kraschnewski et al16 found that women frequently used social media sources (such as Facebook) to share their own experiences and learn about the experience of others—for example, with regard to birth methods. Their findings included key important themes: 1) prenatal care structure is not patient centered, 2) women used technology to fill gaps, and 3) technology has limitations in supporting their pregnancy-related needs. The digital communication platform of the Internet expanded the ability for people to share these experiences and for the personal accounts to disseminate widely.29
The possibility of remaining relatively anonymous on the Internet explains the appeal of online narratives. The anonymity of the digital platform creates opportunities for marginalized groups to participate in social activism.24 In diverse populations, the lack of face-to-face contact may be beneficial and encourage participants to directly communicate their opinions without fear of judgment; as a result, online narrative platforms may provide a safe space for marginalized populations to share and to seek out experiences and opinions that may differ from the mainstream, as the “We are the 99 percent” blog demonstrated.24,30 Advocates suggest that online groups serve as therapeutic outlets where individuals are freed from impediments.29 When health centers set up online discussion boards to build support systems within their patient community, the benefits include personal empowerment, reduced depression, better comprehension of medical procedures, and identifying gaps in patient knowledge.21 Further insight into the perspectives of individuals may shed light on practical, as well as ethical, implications of narrative related to issues of health.31
Communal blogs facilitate storytelling online by providing opportunities for individuals to co-construct meaning and to engage in discussion about lived health experiences. In particular, communal blogs aim to create spaces for discussing and sharing experiences and information, thus resulting in communities of individuals interacting online. Few studies describe the role of storytelling online from the perspective of individuals and how these individual experiences can be used to construct public health messages, policies, and health communication campaigns.29 Therefore, the current study analyzed the use of the multimedia social media platform Tumblr and the role of health as narrative among individuals organizing collectively in an online community. By exploring the perceptions and attitudes toward health and health care of the “We are the 99 percent” bloggers amidst the peak period of social movement, we examined the political views of marginalized community members. Our primary focus was to better understand the role of health and the health care system in the context of the Occupy Wall Street movement. Through qualitative research methods, this study assessed community applications of multimedia blog posts, which also offer implications for the application of new media intervention strategies. Findings offer suggestions for clinicians in understanding the attitudes of their patients in real time through the use of social media.
Researchers conducted a content analysis on 15 months of “We are the 99 percent” blog posts beginning September 1, 2011, and concluding November 30, 2012. This period encompassed the height of the Occupy Wall Street movement, comprising 2003 blog posts. Although the Tumblr blog is still active, there have been fewer than 30 posts since December 1, 2012. The “We are the 99 percent” posts provide detailed explanations of the lives of these bloggers, which frequently (approximately 55%; n = 1110) included their personal perceptions of and experiences with health and the health care system. For this reason, the blog represents a unique, experiential account of the role of health in the lives of individuals who identify with the Occupy Wall Street movement. A qualitative content analysis provided the most appropriate approach to study how bloggers made meaning of their lived experience because this method of analysis reveals the perspectives and discourse of individuals situated in a social change dialogue.32 Because blog posts are publicly available, research using these data does not meet the definition of human participant research. Although an institutional review board application was not required, all researchers completed training in the appropriate conduct of research and all ethical standards were followed in the completion of the study. Researchers included undergraduate and graduate students studying public health at a liberal arts and sciences university mentored by a faculty member. A class assignment led students to discover the Occupy Wall Street movement and pursue this research project after the completion of the course.
Collection of data was performed in chronologic order to capture all posts written during the designated period, which included the height of the Occupy Wall Street movement. In a database, researchers logged the text from each post, a link to the post, the date of the post, the age of the blogger (if known), and a description of the photograph. In total, 2003 blog posts were collected. Approximately 55% of these blog posts (n = 1110) discussed health topics or health care. Health topics included discussion of disease or illness, medications, medical treatment, and health services, such as preventive care. Health care included health insurance, coverage, medical bills, and paying for services and treatment. Adults posted on behalf of young children and infants younger than age 1 year. Bloggers ranged in age from 12 to 89 years.
To ensure credible, dependable, and replicable qualitative methods, data analysis included data reduction, data display, and conclusion drawing and verification.33 Initially, researchers coded each blog post line-by-line to create descriptive codes. When possible, researchers identified “in vivo” codes on the basis of the words and phrases that participants used repeatedly (eg, health insurance, medical bills, preexisting condition, etc). Interpretive codes were used to further reduce the data and provide explanations for participants’ experiences (eg, the importance of health insurance, the role of access to care, and quality of health care). Finally, pattern codes allowed researchers to identify emergent themes (eg, patterns among marginalized populations, the cost of injury and illness, and the impact of facing a medical crisis). Researchers were trained to use a book of codes related to health and health care and met frequently throughout the data analysis process to discuss and modify codes. The codebook allowed researchers to maintain consistency and reliability while compiling data from the original source online. Clearly defined codes ensured standardization and categorization of health topics.
Researchers used Miles and Huberman’s check-coding formula on 7.5% of the sample. Agreement between coders reached approximately 90%, attaining Miles and Huberman’s standard for intercoder consistency, indicating that researchers accurately employed the coding system. Microsoft Excel (Microsoft Corp, Redmond, WA) on Google Drive (Google Inc, Mountain View, CA) provided structure and an interactive data display to code and analyze data. Researchers identified patterns emerging from the data using the codes as a guide through constant comparison of the blog posts.34 Researchers met to identify concepts, discuss data patterns, and agree upon themes and conclusions emerging from these data.
Data analysis revealed bloggers engaged in narratives about health and health care. The personal narratives of the bloggers provided insight into their perceptions and beliefs with two overarching themes emerging: 1) the personal and financial toll of health issues and 2) attitudes toward the US health care system. Narratives described facing a medical crisis, being ill or injured, or living on the margins, all of which negatively affected health and financial solvency. The health care system was discussed in relation to the importance of being insured, accessing health care, and the quality of medical services. Themes are presented with illustrative quotes in Table 1. Quotes are a true representation of bloggers’ posts. Posts are identified with a link to each individual entry in Table 2.
Facing a Medical Crisis
The financial consequences of medical crises emerged as a critical narrative in the bloggers making meaning around health. Bloggers described how medical bills and debt incurred from health treatments wiped out personal savings and led to credit card debt. Swamped by medical bills and in debt, many bloggers were forced to make difficult decisions, such as compromising quality health care to pay for food or rent. One blogger was “foregoing … annual physicals and any kind of dental work in order to put food on the table” (2011, Oct 27, Re: I live, as my). Many individuals discussed the decision to defer health care to afford more urgent necessities. Children also faced a lack of health care. According to one mother, “rent and food were more important” (2011, Oct 16, Re: I’m 42, disabled after).
The Cost of Injury and Illness
Bloggers described the loss of employment or financial independence caused by injury and illness, including chronic disease. A 34-year-old health care worker wrote a post about losing her job because of a rare medical condition. She was “denied state health insurance because [she made] too much money on unemployment” and was unable to find a job that offered more than the unemployment compensation (2011, Dec 10, Re: I am a 34). The onset of disability owing to living for years without access to health care emerged as a primary concern among bloggers. One woman wrote, “not having insurance ruined my husband’s body. He is 47 with the body of a 67 year old. He can barely walk” (2011, Sep 29, Re: All I remember is). Many bloggers discussed the relationship between employment status and health insurance coverage, emphasizing the inability to escape from a cycle of illness. As one blogger stated, “health and the ability to work shouldn’t be something exclusive to those who can afford it” (2011, Sep 29, Re: No job=no insurance).
On the Margins
Marginalized populations, including women, veterans, homeless, lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) men and women, and individuals with mental illness, faced an additional set of obstacles. In particular, women’s health care services were perceived as a low priority for health care coverage. One woman noted, “My coverage denied normal, annual GYN visits because being a woman is a preexisting condition” (2011, Oct 30, Re: My father was fired). The high cost of pregnancy and childbirth led many bloggers to describe tremendous financial strain. According to one blogger, “I had a home birth because we do not have health insurance. My son has never seen a doctor” (2011, Oct 26, Re: I am 31, married). A frequent concern included the cost of contraception: “we don’t want children so we pay ridiculous $ for birth control” (2011, Oct 18, Re: Tired and mad as). The financial burden of being a woman was perceived as causing debt among these bloggers.
Health Care System
The Importance of Being Insured
Bloggers suggested that the only way to secure affordable health care was through an employer. This led to limited options for a range of individuals, including those who had to work extra hours for health benefits, were unable to work owing to disability, were self-employed, worked part-time with no benefits, or were unemployed. Many blog posts discussed the lack of access to health care because of unemployment or underemployment. One blogger wrote that his father “has his own business and works 70-80 hours a week to take care of me and my mom. He doesn’t have health insurance but pays for me and my mom to have coverage” (2011, Oct 17, Re: My dad has his).
The bloggers described a health care system that does not provide adequate coverage for all US citizens. Bloggers described the fear, worry, and frustration of living without insurance and sinking deeper into debt. Even those bloggers with steady employment highlighted the increasing cost of health care. One employee wrote, “My company just cut my pay 20% and increased my health insurance costs 20%, all while doubling my responsibility” (2011, Oct 17, Re: I am a 38). Bloggers discussed an increasingly unstable health care system.
Bloggers described increasing premiums and deductibles as the primary cause for their inability to afford health insurance and that “pay never kept up with inflation” (2011, Oct 9, Re: I worked hard and). A 41-year-old woman stated that “The insurance premiums are well over 1/3 of each paycheck,” exemplifying common worries about the rising cost of health care (2012, Apr 17, Re: I’m a 41 yr). Bloggers described preexisting conditions as a major barrier to accessing adequate health insurance and a cause of financial hardship. A 20-year-old blogger said that she was unable to get health insurance because of a “condition [she] was born with” (2011, Oct 1, Re: I am 20 years). This blogger, like many others, suggested that the health care system allowed those with preexisting conditions to fall through the cracks.
Quality of Health Care
Many bloggers believed that the medical system was taking advantage of patients to earn increasing profits. Posts mentioned the debt and emotional turmoil caused by unnecessary procedures and medications, such as one patient undergoing “800 spinal injections” to treat fractures, which were not helpful and had to be paid for out-of-pocket (2011, Oct 23, Re: I am 23 and). Medical malpractice was another concern of bloggers. One blogger stated that she had to receive a second surgery “to fix the first sur
gery, which was botched by an inexperienced doctor, whom I still owe [money to]” (2011, Oct 31, Re: 33, single mother). Bloggers perceived that the overuse of medical services and technologies by clinicians drove up the price of medical care and led to unnecessary, costly, and potentially dangerous treatment.
The current study explored the role of narrative storytelling by examining how “We are the 99 percent” bloggers co-constructed meaning about health and health care in the context of the Occupy Wall Street social justice movement. The role of health as narrative emerged as bloggers described the impact of facing a medical crisis and the cost of injury and illness on their ability to remain financially solvent. These issues disproportionately impacted individuals living in the margins, including women and veterans. Bloggers discussed the importance of insurance coverage and the limitations of a system dominated by employer-sponsored coverage. Bloggers also identified challenges to accessing health care, including the role of preexisting conditions and denial of quality medical care.
Findings expand existing research on the potential for use of social media as a means to connect to peers and fellow patients. As in previous studies, the “We are the 99 percent” Tumblr demonstrated that social media outlets allow greater connectivity between individuals.29 In a study by Frost et al,35 patients with amyotrophic lateral sclerosis (“Lou Gehrig’s disease”) not only shared their own stories but also commented on others’ posts and questions, and used the forum to “foster and solidify relationships based on shared concerns.” A Scandinavian study of breast cancer patients36 who were motivated to use an online support group did so as a means of “breaking the social isolation” that comes along with chronic pain after cancer. Narrative can be a powerful tool in fomenting change when readers are able to identify with the writer. Through this connection, the message offers a greater impact, suggesting that the opportunity exists to influence behavior.36
This study provides an understanding of how health care access is intertwined with other current sociopolitical realities faced by society. Typically, individuals turn to specific health-based communication platforms (such as PatientsLikeMe or the Association of Cancer Online Resources) or groups (within Facebook or Twitter) to understand these issues. A wealth of information on how people deal with challenges faced by not only patients with certain conditions, but also by anyone who interacts with the health care system, can be gleaned through this type of methodology and through defining “health issues” more broadly. In the current study, despite the highly varied backgrounds of the bloggers writing for the “We are the 99 percent” Tumblr, blogging provides the same capacity to unify. The diversity in authorship in the posts is one of the most powerful tools of open source social media because it presents a unified struggle spanning class, geography, and ethnicity. Such varied backgrounds allow a wide range of readers to identify with a given blogger, eliciting empathy for a common struggle. The voices and experiences of the bloggers provided a novel opportunity for health professionals to access audiences using these online platforms for health communication campaigns and public health interventions.14,20,22,23
The use of social media activism in the Occupy Wall Street movement constructed a comprehensive narrative illustrating bloggers’ dissatisfaction regarding health care in the US and its impact on public health.14 This grassroots movement demonstrated the widening disparity in health care and health status between low-income and high-income individuals, as evidenced in the “We are the 99 percent” Tumblr. The “We are the 99 percent” Tumblr illustrates that social media allows for the sharing of stories that might ordinarily be suppressed. Localized social stigma surrounding health issues is powerful in silencing affected communities. Online narratives provide the opportunity of anonymity and empower the storyteller to share beyond a local audience.24 The relatively anonymous arena of the “We are the 99 percent” Tumblr and other online story-sharing platforms provides the opportunity for health communication campaigns to observe and address the stated needs of marginalized individuals who were more difficult to reach before the advent of blogs and other social media tools. Additionally, this type of anonymous blog encourages information sharing. Concerns about privacy have been shown to hamper patients’ willingness to fully disclose aspects of their particular condition(s) within health specific sites, such as Association of Cancer Online Resources.37 By utilizing an anonymous, narrative framework, patients may be more willing to share their experiences, and public health practitioners can gain a better understanding of the real-time health experiences of low-income and marginalized populations as well as use this consciousness-raising platform as a tool in health communication campaigns.38
Although the Affordable Care Act1 was signed into law on March 23, 2010, many of the changes are still in the process of being implemented; and some have been challenged in court.39,40 Beginning in July 2013, insurance coverage became available to those with preexisting conditions according to Title I of the law. Title I also requires that preventive care be covered, improving opportunities to manage medical conditions early, before they require major intervention.1 Findings suggest that upholding and strengthening this legislation, including wellness care and contraceptive coverage, may address some of the bloggers’ concerns with health care and help to prevent future health crises by requiring a greater number of individuals to maintain health coverage with a greater emphasis on preventive care.40 Public health practitioners should consider using online narratives to develop and improve future public health policy. In addition, clinicians and community organizations can use online narratives and social media platforms to improve health care for individuals, as well as to garner support for future health care legislation through information sharing and education.
Strengths and Limitations
Qualitative methods provided insight into the narratives of the “We are the 99 percent” bloggers regarding health. However, one limitation may be that those who made use of the Tumblr social media platform may differ in important characteristics from other social media users. According to the Pew Research Center,41 Tumblr is particularly appealing to young adults, aged 18 to 29 years. Bloggers are evenly divided by gender and tend to represent high and low incomes (including incomes below $30,000).41 Another limitation is that these bloggers already identified strongly with the ideology of the Occupy Wall Street movement. Therefore, the findings may not be generalizable beyond this population of bloggers; however, the experiences described in the “We are the 99 percent” Tumblr may be suggestive of the experiences with health care of other individuals who may not be as politically inclined as the bloggers in the study. Further research should be conducted to determine whether this population’s experiences are reflected in other social media narratives. Future areas of research include facilitating online personal narratives to disseminate health messages and to address health care gaps through health promotion and interventions that reflect the stated needs of these populations. Monitoring of social media by public health practitioners will allow health communicators to gain insight into individuals’ needs and attitudes toward health care reform as more aspects of the Affordable Care Act1 are implemented. This study provides insight into the use of online narrative as a method for understanding these needs and improving public policy. The “We are the 99 percent” Tumblr illustrates the apex of the Occupy Wall Street movement. As such, this study provided the opportunity to explore issues of health and health care during a period of social change in the US. Thus, the study can serve as a basis for future research using online narratives about health to gauge individuals’ perceptions of health care.
This study offers practical implications for health communicators and health care practitioners related to community applications of multimedia social media platforms. Storytelling is powerful in fostering compassion and self-reflection, challenging listeners to examine their experiences and the experiences of others. The dissemination of a narrative through social media can elicit rapid empathy from a potentially worldwide audience empowering the movement far beyond what was capable in the recent past.42 This rapid exchange of stories over a broad base, as in the “We are the 99 percent” Tumblr, may provide a model for people to share their personal knowledge of health, further increasing the impact of health communication campaigns as well as providing knowledge about personal health issues and perceptions to health care practitioners.
The author(s) have no conflicts of interest to disclose.
Mary Corrado, ELS, provided editorial assistance.
How to Cite this Article
Sundstrom B, Meier SJ, Anderson M, et al. Voices of the “99 Percent”: The role of online narrative to improve health care. Perm J 2016 Fall;20(4):15-224. DOI: https://doi.org/10.7812/TPP/15-224.
1. The Patient Protection and Affordable Care Act of 2010. Public Law 111-148, 111th Congress, 124 Stat 119, HR 3590, enacted 2010 Mar 23.