Privacy: preventing harm or innovation?

Jodi Sperber
Susannah Fox
Colleen Young
Wendy Sue Swanson
Pamela Ressler


  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.

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