Unpacking Privacy






Pamela Ressler @pamressler

Privacy is an ambiguous, powerful concept that, while meant to protect individuals, often shuts down useful conversations and innovations. As we continue to unpack our #MedX topic, Privacy: Preventing Harm or Innovation, by flipping the panel and actively engaging conversations I am struck by the notion that perhaps the word privacy does not fully address what we are examining in the context of social media and online communities.  The Merriam Webster dictionary defines privacy as "the state of being alone: the state of being away from other people: the state of being away from public attention." If we are engaging in online communities can or should we expect privacy?

Jodi (@jsperber) pondered in her initial #MedX panel post, What's Your Relationship with Privacy...Um it's Complicated, that when we use the term privacy in this context, are really responding to a lack of control of the dissemination of the information we are sharing? Perhaps this is rooted in the difference between privacy and confidentiality. Confidentiality refers to the ethical grounding of the patient-provider relationship. Information shared is not divulged without the express understanding of both parties. Are we uncomfortable with the perceived violation of this ethical concept  when we openly share health experiences in the public forum of social media? Do the benefits of connection outweigh the risks of information sharing? Is our digital footprint truly controllable?

In 2011, when my  Tufts University School of Medicine colleagues and I surveyed patient bloggers in Communicating the Experience of Chronic Pain and Illness through Blogging, we found the majority of bloggers chose to publish their blogs on public, openly searchable platforms (such as Blogger, Wordpress). These blogs were frequently shared and read by friends and family, and potentially a broader audience of unknown readers. The issue of privacy/confidentiality did not seem to be as prominent as it is today. Did the controlled ability of blogging; being able to edit, revise and then share  lend a level of perceived privacy even though the information shared resided in a public space? Was there an unstated expectation of confidentiality between blogger and her/his audience? Has the increased prevalence of social media and online sharing changed our perception of the concepts of privacy or confidentiality?  It is interesting to consider whether participation in online communities and the rapid, real time conversations in spaces such as Twitter or Facebook feels more vulnerable and public than the more controlled method of blogging.  Do online communities and real time digital interaction with others support the benefit of group empathy but at the same time expose participants to increased fear and vulnerability?  

As the ability to connect through social media evolves,  in health information sharing and creating more personalized medical systems,  let us begin to unpack privacy by examining and investigating broadly this elusive, ambiguous, powerful concept.

Do we have you hooked on this topic yet? We are thrilled to throw open our sandbox to those who want to think, discuss and create with us. This is the essence of a flipped panel. The conversation continues and evolves  through each interaction… please join us, Colleen Young (@colleen_young), Susannah Fox (@SusannahFox), Wendy Sue Swanson (@SeattleMamaDoc), Jodi Sperber (@jsperber) and me, Pam Ressler (@pamressler). We will be using the hashtag #MedX.