A week has gone my since MedX took place at Stanford, and at this point most of us are back to our “regular” lives. But as with any good meeting, the connections and rumination actively continues, and one of the things that I just can’t shake is a topic that came up briefly during a panel on communicating the experience of illness in the digital age: privacy.
A generation ago, we lived in a world where it was relatively inexpensive to remain private, and costly to make something public. Today, with online social networks making it so simple to share our lives, and “big data” evolving to help make sense out of this and other online information, this equation has flipped – it is now far more of an effort to remain private, while making information accessible to others is at times required (consider every time you have had to sign up to access an online service), and often made so simple as to be a nearly thoughtless act.
Now, I know I’m not the only one thinking about privacy online. Heavens, no. If anything, I think it isn’t discussed enough, and it is too often either oversimplified or written in such abstract academic terms as to be inaccessible most readers, robbing us of a chance to reflect how we might consider privacy in a variety of contexts, and how it shapes how we interact with the world.
When considering the changing healthcare landscape, this point can not be stressed enough: privacy is not about secrecy. It is about vulnerability.
danah boyd, in her essay “Making sense of privacy and publicity,” provides a succinct viewpoint on this distinction, stating:
“Fundamentally, privacy is about having control over how information flows. It’s about being able to understand the social setting in order to behave appropriately. To do so, people must trust their interpretation of the context, including the people in the room and the architecture that defines the setting.”
In other words, privacy does not equal secrecy. We are not looking to keep information to ourselves; rather, we want assurance that what we reveal is used appropriately, and not in ways that might harm us. For many, this leads to a desire to keep information close to the chest, fearing stigma or other negative ramifications.
Consider how allowing for vulnerability might impact how we approach healthcare:
- For patients, feeling safe to disclose information might lead to greater willingness to take action without fear of being branded as a difficult or needy patient. Perhaps it would encourage more men – who are less likely than women to visit a doctor – to seek help, when needed. This includes mental health, a highly stigmatized aspect of our overall health.
- For physicians and other health care providers, increased vulnerability (something that is rarely touched upon in medical education in a self reflective way) may allow for a more honest conversation between patient and provider, encouraging shared decision making, patient empowerment, and continuous learning on behalf of the provider.
- For health care systems, establishing an environment where vulnerability is allowed may lead to organizational changes to better educate, train, and create systems where providers are supported to provide the most humane care possible. This relates not only to adverse events, but the patient-provider relationship itself.
In my own research on the BCSM community, there is a clear effort from participants put towards establishing community norms where disclosure is welcomed, allowing for a richer interaction. There are limits to disclosure, however, and based on interviews conducted I know that people frequently take things to a back channel (even if still via Twitter) to get away from the public eye. At the same time, a number of people specifically cite disclosure as a means of helping others and receiving support. This cuts across patients, providers, advocates, and caregivers. No system is perfect, but this does provide a model to examine and consider.
Paul Batalden’s observation, “every system is perfectly designed to get the results it gets” resonates deeply here. By keeping this conversation open, we can shift the focus away from keeping information locked away, and look towards ways to create more meaningful engagement.