I've become increasingly aware of - and inspired by - the ways that social media is enabling platform thinking, de-bureaucratization and a redistribution of agency in the realm of health care. Blogs, Twitter and other online forums are helping a growing number of patients - who have traditionally suffered in silence - find their voices, connect with other patients (and health care providers) and discover or co-create new solutions to their ills. In my view, this is one of the most exciting and promising areas of computer supported cooperative work (CSCW), and in my role as Publicity Co-chair for ACM CSCW 2012 (February 11-15, Seattle) I am hoping to promote greater participation - in the conference - among the researchers, designers, developers, practitioners and other innovators who are utilizing social media and other computing technologies for communication, cooperation, coordination and/or confrontation with various stakeholders in the health care ecosystem.
Dana Lewis, the founder and curator of the fast-paced, weekly Twitter chats on health care in social media (#hcsm, Sundays at 6-7pm PST), recently served as guest editor for an upcoming article on social media in health care for the new Social Mediator forum in ACM Interactions magazine. The article - which will appear in the July/August 2011 issue - weaves together insights and experiences from some of the leading voices in the use of social media in health care: cancer survivor, author and speaker "ePatient Dave" deBronkart promotes the use of technology for enabling shared decision-making by patients and providers; patient rights artist and advocate Regina Holliday shares her story of how social media tools are enabling her to channel her anger with a medical bureaucracy that hindered her late husband's access to vital information in his battle with cancer by writing on walls, online and offline; pediatrician Wendy Sue Swanson describes how she uses her SeattleMamaDoc blog for both teaching and learning in her practice of medicine; health care administrator Nick Dawson invokes the analogy of school in offering his perspective on the evolution of social media in health care, as it matures from freshman-level to graduate studies.
In my social media sojourns, I've encountered many other inspiring examples of people, programs and platforms that are being used to empower patients to connect more effectively with information and potential solutions:
- Susannah Fox and her work at the Pew Research Center at the intersection of technology and health care
- Gilles Frydman, founder of ACOR.org, the Association of Cancer Online Resources, where ePatient Dave discovered a path that led to his cancer cure
- Ted Eytan, a family physician who promotes patient-centered health care on his blog and in his offline practice
- Erica Holt, a digital marketing strategist who recently explained why we need more research in health care social media
- Kelly Young, aka @rawarrior, who shares information, encouragement, insights and experiences in dealing with her disease and health care providers on her Rheumatoid Arthritis blog
- e-Patients.net, the blog of the Society for Participatory Medicine, where many of the people mentioned in this post regularly participate
It is important to note that health care has been an area of focus for CSCW in the past. For example, there was a CSCW 2011 sesssion on health care, and other papers on health care were presented in other sessions:
- Activity Analysis — Applying Activity Theory to Analyze Complex Work in Hospitals
Jakob Bardram, Afsaneh Doryab
- Coordinating Time-Critical Work with Role-Tagging [PDF]
Aleksandra Sarcevic, Leysia Palen, Randall Burd
- Improving Communication and Social Support for Caregivers of High-Risk Infants through Mobile Technologies [PDF]
Leslie S. Liu, Sen H. Hirano, Monica Tentori, Karen G. Cheng, Sheba George, Sunyoung Park, Gillian R. Hayes
- Health Information Use in Chronic Care Cycles
- "It's not that I don't have problems, I'm just not putting them on Facebook": Challenges and Opportunities in Using Online Social Networks for Health [Scribd]
Mark Newman, Debra Lauterbach, Sean Munson, Paul Resnick, Margaret Morris
There were also a number of health care presented at CSCW 2010:
- Invisible Emotion: Information and Interaction in an Emergency Room [PDF]
Helena M. Mentis, Madhu C. Reddy, Mary Beth Rosson (The Pennsylvania State University)
- Understanding Together: Sensemaking in Collaborative Information Seeking [PDF]
Sharoda Paul, Madhu Reddy (The Pennsylvania State University)
- Why the Plan Doesn’t Hold - a Study of Situated Planning, Articulation and Coordination Work in a Surgical Ward [PDF]
Jakob Bardram (IT University of Copenhagen), Thomas Riisgaard Hansen (Cetrea A/S)
- Characteristics of Shared Health Reflections in a Local Community [PDF]
Andrea Grimes, Brian M. Landry, Rebecca E. Grinter (Georgia Institute of Technology)
There was also a CSCW 2010 workshop on CSCW Research in Health Care: Past, Present & Future with 21 papers.
My primary goal in this particular post is to increase awareness and broaden the level of participation among people designing, using and studying social media in health care. My most immediate goal is to alert prospective authors about the upcoming deadline for Papers and Notes - June 3 - which has been moved earlier this year to incorporate a revision & resubmission phase in the review process, which was partly designed to accommodate the shepherding of promising submissions by authors outside of the traditional CSCW community who have valuable insights and experiences to share.
At some later phase, I'll start instigating, connecting & evangelizing other channels of potential participation, such as posters, workshops, panels, videos, demonstrations, CSCW Horizon (a category specially designated for non-traditional CSCW) and the doctoral colloquium. For now, I would welcome any help in spreading the word about the conference - and its relevance - to the health care social media community.