5 research outputs found
Blogging Chronic Illness and Negotiating Patient-hood: Online Narratives of Women with MS
Personal narratives about women\u27s everyday lives with chronic illness are mapped onto the landscape of social media through blogging. Social media is facilitating an already-existing shift in patients\u27 roles as they are increasingly enabled and expected to self-educate themselves about their illness, collaborate with providers, self-manage their care, and engage in health activism. The health care industry has seized on the widespread use of social media to bolster rhetoric that the accelerated knowledge development made possible through social media has the potential to revolutionize the practice of medicine. Critics, however, argue that responsibility and activism via digital technologies has become an obligation of patient-hood that reproduces and masks neoliberal disciplinary practices that are embedded in health care. Lost between the divergent viewpoints of industry advocates and academic critics is the voice of patients whose use of social media blurs the boundaries of these ideological distinctions through their lived experience.
Women with chronic illness practice patient-hood in part by using social media in the negotiation between the opportunities available to them and expectations placed on them. Blogging can be understood as multiple concurrent practices: empowering, resistant, and disciplinary. As an empowering practice, bloggers seek and find mutual understanding, form social networks, share experience, and create new knowledge. As a resistant practice, bloggers challenge medical authority, negotiate social expectations, and direct new narratives that may help to de-stigmatize serious illness. As an act of participatory patient-hood, blogging reproduces the disciplinary practices characteristic of the neoliberal shift in health care and support services from collective to individual responsibility. Specifically, this study examined blogs written by women with Multiple Sclerosis using a three-part methodology: an ethnographic content analysis and close reading of blogs as life narratives (N=40); a survey of bloggers (n=20) about their blogging activities; and a five-week online discussion forum with bloggers (n=9) about their experiences with blogging about their lives with a chronic illness. In addition, the research envisions the online environment as a material, co-created and mediated space in which bloggers enact these complementary and contradictory practices
Practicing Patienthood Online: Social Media, Chronic Illness, and Lay Expertise
The use of digital technologies and social media by people with serious illness to find, share, and create health information is much celebrated but rarely critiqued. Proponents laud “Health 2.0” as transforming health care practice and empowering patients. Critics, however, argue that a discourse of developing lay expertise online masks the disciplinary practices of the neoliberal state’s emphasis on individual responsibility. Notably, the perspectives of people who are engaging with social media related to their health and illness are under-represented in this debate. This research examines the experiences and perspectives of women who blog about their lives with Multiple Sclerosis in order to situate them in the context of these conflicting ideologies. Methods consisted of an ethnographic content analysis (N = 40), an online survey (n = 20), and an online discussion forum (n = 9). Findings revealed that blogging is neither inherently empowering nor inevitably disciplinary. Rather, it simultaneously offers opportunities for patients to gain medical knowledge and resist medical patriarchy, as well as compounds expectations placed upon patients to assume greater responsibility for managing their care
Evidence-Based Decision Making in Local Health Departments
Evidence-based decision making (EBDM) represents an important strategy to increase efficacy and efficiency of public health programs and practice. There is insufficient information on the application of EBDM among local health departments (LHDs). This qualitative study examined use of EBDM in New York State (NYS) LHDs and factors facilitating and impeding its adoption through interviews and focus groups with 47 LHD commissioners, health directors, and other upper-level staff. Findings suggest variability in application of EBDM in NYS LHDs. A number of internal factors (e.g., staff capacity, organizational culture) and external factors (e.g., policy environment, appropriate and replicable evidence-based models) contribute to its uneven use, even within a single LHD