Research
The Rise of Rare Illnesses in America
Healthcare in the United States has become increasingly precarious, costly, and difficult for patients to navigate. While medical breakthroughs have helped prolong the lives of many Americans, our healthcare system now faces the challenge of assisting patients who have developed incurable, chronic illnesses. Current research reports that as many as six out of ten Americans live with a chronic illness, and four out of ten live with more than one chronic illness (Center for Disease Control and Prevention, 2019). Some of these chronic illnesses are well known and have dedicated advocacy and funding, such as diabetes or Alzheimer’s disease. However, many of these diseases are rare, relatively unknown illnesses. It is estimated that approximately 30 million Americans are currently living with a rare disease, roughly one out of every ten Americans (National Institutes of Health, 2017). This figure demonstrates that while instances of each particular illness may be rare, in total rare diseases represent a large healthcare problem in the United States.
Additionally, rare diseases present a multitude of communication problems in healthcare. Rare illnesses have many different causes, and it is often difficult to identify a single origin for any particular illness. Most rare illnesses have few treatments, and many have no treatments at all. Only a few types of rare diseases are tracked after diagnosis, which makes it difficult to locate those affected to coordinate treatments, research, and advocacy efforts. Cumulatively, these problems can leave patients feeling invisible and isolated from healthcare providers, who may not adequately understand how to diagnose and treat their condition, and their communities, who may not be able to understand how to provide support at home, school, or in the workplace. This leaves patients to carry heavy physical, mental, and emotional burdens.
The Internet and Patient Advocacy
However, the Internet has increasingly transformed patients’ access to and engagement with health information. In a widespread survey of health and Internet use, 72% of adult internet users stated that they had searched for health information online in the past year (Fox & Duggan, 2013). Additionally, 87% of teens and young adults (aged 14–22) have searched for health information online, and 39% of this population reported going online to connect with other individuals with similar health conditions (Rideout & Fox, 2018). This rise in patients participating actively in their own healthcare has led to increased advocacy and funding for rare illnesses and the increasing inclusion of patient perspectives within healthcare settings, most notably in movements such as patient-centered care and shared decision-making (Segal, 2009).
In response, scholars within health communication have correspondingly shifted their attention to understanding how everyday health literacy practices rhetorically shape the decisions that patients make in healthcare settings (Arduser, 2011; Bivens et al., 2018; Bellwoar, 2012; Hensley Owens, 2009; DeHertogh, 2015; Segal, 2009). Much of this scholarship focuses on how patients are using online platforms to voice their own stories and experiences as a particular form of expertise. These studies effectively demonstrate how patients develop health literacy practices that are “embodied and technological”; individuals often navigate varying levels of complex information from both institutional and online sources and combine that information with their own bodily experience to make more meaningful health decisions (Bivens et al., 2018). This scholarship demonstrates how technology has complicated traditional notions of agency, expertise, and empowerment in writing studies. However, research to understand and document how patients’ stories affect health outcomes is still relatively new, and much of this work has focused on the individual’s ability to gather information in order to strategically harness agency. While these theories are immensely useful, they may not fully explain the type of collective, networked agency that can manifest within health communities to spur social change in medicine.
Connecting Patient Agency with Advocacy Networks
My research focuses on how patients with rare illnesses not only strategically build these embodied health literacy practices individually, but also work collectively with others in health communities to intervene in current approaches to medical decision-making. These health communities are important because although patients are individually dispersed across the world, they collaborate to share their health stories and build valuable communal knowledge about their health. While writing these stories can provide therapeutic benefit to patients, they also serve a vital role in patients’ treatment decisions. I argue that understanding the shared stories of patients can help researchers in health communication better understand the diverse values and concerns of patients across a variety of rare diseases in order to develop more effective interventions. When stories from these communities are viewed as crucial data, and this data is circulated, distributed, and shared, it can ignite social change that results in better outcomes for patients.