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10:05 - 10:50 amSaturday, September 26
Plenary Hall
Privacy: Preventing harm or innovation?
Plenary Hall
Privacy: Preventing harm or innovation?
Faculty, Tufts University School of Medicine
PhD Candidate, Brandeis University
CTO, U.S. Dept of Health & Human Services
Community Consultant, Mayo Clinic
Physician, Blogger, Seattle Mama Doc, Seattle Children's Hospital
 Privacy is an ambiguous, powerful concept that, while meant to protect us, can shut down meaningful conversation and innovation. Discussions of privacy often happen within silos, missing opportunity... Read more


 Privacy is an ambiguous, powerful concept that, while meant to protect us, can shut down meaningful conversation and innovation. Discussions of privacy often happen within silos, missing opportunity for translation across professional and personal lines. This interdisciplinary panel will unpack the meaning of privacy in health care, expand the audience’s understanding of its nuances and practical applications, and inspire people to build health systems based on trust, freedom, and discovery.

  Through flipping the panel, the panelists will tap into the expansive collective knowledge of their social networks to inform and guide the discussion in the months leading up to conference. The onstage panel discussion will be but one link in the chain to reimagining “what is privacy” -- to not only bring it into the spotlight but pushing the issue of privacy in health forward and up to new levels of understanding.

  This intrepid panel will create a level of engagement that is both memorable and measurable to Medicine X again this year.

Susannah Fox, Entrepreneur in Residence at the Robert Wood Johnson Foundation, will discuss a taxonomy of the word “privacy” along with survey results about citizens’ perceptions and concerns about controlling their personal information. She will also bring insights from health policy and legal expert interviews, as well as stories from her fieldwork in patient communities to illustrate the opportunities and pitfalls of openness.

Wendy Sue Swanson, MD, MBE will bring her perspective as a practicing pediatrician, public physician, and hospital executive in digital health. She is building tools for collaboration with patients and families in an academic children's hospital and will discuss how her transition to public sharing of her motherhood and parenting strengthened her listening skills and powered her public voice as a pediatric health advocate.

Colleen Young, an online community strategist and Founder of #hcsmca, will underline the motivations that bring people to patient and caregiver communities. She’ll discuss how online conversations that delve into the domain of private help people cope, learn, support and mentor. For many, sharing online trumps conventional concerns about privacy in health, and gives people the confidence and passion to pioneer a safer social web. 

Jodi Sperber asked a question of panelists at last year’s MedX that served as the seed for this session. She will share her perspective as someone who spent her career in public health bringing the patient voice into policy and program development. A doctoral candidate at The Heller School of Social Policy and Management at Brandeis University, her research is focused on demonstrating the ways individuals are taking advantage of technology, particularly social media, to gather health related knowledge, share experiences, and find strength in community.

Pamela Ressler, MS, RN, faculty member in the Pain Research, Education and Policy Program at Tufts University School of Medicine will provide moderation of the panel. Pulling out themes, ideas elicited by the individual panelists and the ensuing discussion between panelists. She will frame the discussion with background information on privacy in the digital landscape of health care.

Pamela Katz Ressler, RN, MS, HN-BC is the founder of Stress Resources in Concord, MA, a firm specializing in strategies of resilience for individuals and organizations. Additionally, she is a faculty member in the Pain Research, Education, and Policy Program at Tufts University School of Medicine in Boston MA, a graduate program examining and studying the burden of pain in an integrative, multidisciplinary model. Pam's passions and academic research intersect in the area of using digital tools to build resilience through understanding the narrative of a patient's experience with chronic illness and pain. You can follow Pam on Twitter at @pamressler.

Ms. Sperber gathers, synthesizes, and tells the stories behind the data. Currently, she is

completing her PhD Health Policy at the Heller School at Brandeis University. Her research

explores a novel online health community based on Twitter, and seeks to examine the notion of

patient centered care within the context of a public social network. At its core, this research asks

how social media – and more broadly, health information technology – is impacting ways we

communicate about/engage in health, and posits that this type of community may act as a

meaningful forum for interdisciplinary (patients included) exchange as well as traditional

emotional and informational support.

Colleen Young is internationally recognized for her expertise in building online health communities that thrive. She’s the Founder of Health Care Social Media Canada (#hcsmca) – an inclusive, cross-disciplinary community driving social collaboration for better health and health care. She is also the Community Strategist for Canadian Virtual Hospice a virtual community for people living with or caring for someone with a life-limiting illness. Her current work of passion is consulting with the Mayo Clinic on the redesign of their online communities Mayo Clinic Connect and the Social Media Health Network.

In 2012, Colleen was awarded the Journal of Medical Internet Research Award at the Medicine 2.0 Congress at Harvard University. Publications include Community Management That Works. She frequently speaks and writes about chronic illness in the digital age and the impact of social web in health and health care.

Wendy Sue Swanson, MD, MBE is a board-certified pediatrician and author of the Seattle Mama Doc blog, the first pediatrician-authored blog from a major children’s hospital. Dr Swanson is working to revolutionize health communications by using social media to bridge the gap between parents/patients and doctors. She interprets research and hopes to dispel myth.

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