Participatory Patienthood and Personal Health Blogs

Collette Sosnowy, Environmental Psychology
Faculty Advisor: Joan Greenbaum
NML Award: The History and Public Health Award (September 2012)

Participatory Patienthood and Personal Health Blogs

According to some in the American health care industry and the mainstream media, a “revolution” in how health care is practiced is occurring with the help of Web 2.0 applications. Proponents encourage patients to be willing and able to educate themselves about their disease, management, and treatment, to enter into partnerships with medical providers, to assume primary responsibility for managing all aspects of their disease, and to engage in health activism. Social media applications such as blogs are seen as an important means through which these practices are facilitated and encouraged. While the conception of “empowered” patients who are knowledgeable about health care has been part of the cultural rhetoric for several decades, Web 2.0 is seen as a means to unleash its full potential.

While enthusiasm for the potential of Web 2.0 applications to contribute to this vision is abundant in the health care industry and the mainstream media, some academics argue that a heavy burden is placed on the patient by the ‘responsiblization’ of our political culture. Some argue that trying to meet these expectations has become an obligatory, rather than voluntary, part of being a patient.

The perspective of the average patient who is engaging to some extent in Web 2.0 applications related to their health and illness is underrepresented in this debate. Patients’ embodied and lived experience requires them to negotiate the expectations placed on them and the extent to which they want to and are able to be involved in their treatment. These are nuanced and complex practices that include communicating through social media and utilizing blogs to ‘cope’ with chronic illness in a myriad of ways.

Blogs serve as public platforms for narratives of personal experience, offering a location to see the patient’s perspective on both having an illness and engaging in public reflection on that experience. This dissertation explores blogs written by women with Multiple Sclerosis as sites of connection to others and engagement with the medical establishment. The research seeks to draw out the voice of the patient-blogger on being (or not being) a ‘participatory patient.’ The research, which is currently underway, consists of three phases: an ethnographic content analysis of blogs; a survey of bloggers and an online discussion with bloggers.