Exploring Patient Blogs: Communicating the Experience of Chronic Pain and Illness through Blogging

Disciplines across the health professions, including medicine, nursing, psychology, social work, and sociology, are actively engaged in understanding the psychosocial and emotional consequences of chronic pain and illness. Few studies have addressed the use of web-based tools, such as blogs, in the patient experience of living with chronic pain or illness. In 2011, a formative research study, Communicating the Experience of Chronic Pain and Illness through Blogging, was conducted by Ressler, Bradshaw, Gualtieri and Chui (Tufts University School of Medicine). The goal of this research was to explore the use of patient illness blogs as a means of communicating the experience of chronic illness and pain and to articulate the unique set of benefits and barriers of blogging. Qualitative data from 230 current illness bloggers were collected and analyzed to better understand the self-perceived psychosocial and health effects associated with the blogging activity. While acknowledging study limitations, Communicating the Experience of Chronic Pain and Illness through Blogging provides the framework for this panel discussion among experts in the fields of healthcare, peer to peer health and internet, mobile health and the e-patient movement. The diverse backgrounds and expertise of the panel members will provide an engaging, research-based discussion of the topic. Panelists will comment on the study findings, explore web enabled peer to peer healthcare, discuss the role of patient blogs in patient-provider communication, and envision future directions of patient centered digital tools of connection and communication. Moderator: Pamela Katz Ressler (co-author, Communicating the Experience of Chronic Pain and Illness through Blogging) is an adjunct faculty member in the Pain Research, Education and Policy Program at Tufts University School of Medicine. Her research interests surround building resiliency in individuals with chronic pain and illness. Panelists: Matthew Katz, (Partner, Radiation Oncology Associates), is a doctor who currently serves as Chair of Communications for the American Society of Radiation Oncology (ASTRO). His particular interests include enhancing doctor-patient communication and shared decision making. Robert West, is a molecular biologist/geneticist at SUNY Upstate Medical University who’s ushering personalized medicine and social media themes into a 21st century medical school core curriculum. He is a medical student Advisory Dean, serves as an advisory board member for the Mayo Clinic Center for Social Media, and is an ardent e-Patient. Renee Berry, is the founder and CEO of BeMoRe. Specializing in the design and maintenance of a participatory audience, BeMoRe facilitates public engagement consulting for organizations and individuals. Renee is the co-founder of hcsmSV, the Health Care and Social Media in Silicon Valley community and also the co-founder of the #hpm TweetChat, a weekly interdisciplinary forum which has generated more than forty million impressions to raise awareness on hospice and palliative medicine. Jill Plevinsky, serves as the founding chair of the Patient Advisory Council for the ImproveCareNow and the Collaborative Chronic Care Networks (C3N). Her primary research interest is how adolescents with chronic illnesses use social media and new technologies for social support and health information. She currently works at Boston Children's Hospital as a clinical research coordinator in GI/Nutrition where she contributes to clinical and translational research, transition policy development, and quality improvement efforts for pediatric patients with inflammatory bowel disease. Maggie Chesnut, at age 14, founded a support group for fellow youth with chronic pain called Growing Pains, through the American Chronic Pain Association. After 10 years of serving as the group facilitator and National Coordinator, the ACPA is launching a social networking site for youth with pain this summer, and Maggie will serve as the Moderator. Having seen Growing Pains expand from an email based group to a full-fledged social networking site, she is excited about the potential of technology to connect and support communities that might otherwise be isolated. []