“ How social media is changing privacy in medicine: some early ideas …

Dean Giustini | UBC Biomedical Branch Librarian | Adjunct Faculty, UBC’s iSchool

What is social about social media?

"...social media brings people together in order to chat often, talk and share, network and socialize; social media

encourages discussion, feedback, comments & information-sharing

instead of one-way (1.0) broadcasts … think of social media as two-way (2.0) highly-social conversations

Other aspects of what’s social about social media – which are your favourite social media tools?

Why bother with social media?

• Should everyone learn about the web's ecosystem? Why?

• Social media is altering the boundaries (pros & cons)

• Is social capital important in medicine? (Salvatore, 2006)

• Problem-based learning, evidence-based practice, teams

• Patients, physicians & information work together

Shared agency – doctors/patients

• Physician-patient relationship is deeply personal– Complicated by patient suffering (Latin: patior “to suffer")– Patient has limited ability to relieve problems on their own

• Physician viewed as one with power

• Physicians are aware of power imbalance

• Patient empowerment includes use of social media – Patients can take more responsibility for their care– Patients should regulate their own privacy controls

Privacy & Hippocrates

On privacy for the patient:

‘‘…what I may see or hear in the course of treatment in regard to patients, which no one must spread abroad, I will keep to

myself … holding such things shameful to be spoken about…’’

— Hippocrates (460 BC to 370 BC)

• Selective control of access to the “self”

• Dynamic, dialectic process of regulating relationships

• Optimization, multi-mechanism process

• Functions of privacy:– management of social interaction – plans & strategies for interacting with others– development and maintenance of self-identity

Altman’s (1975) theory of privacy

Privacy Management Theory (Petronio, 2002)• Relationships managed by balancing privacy and disclosure

• Privacy and disclosure function in “incompatible” ways

• Personal & collective boundaries

Privacy (Concealing) Disclosures (Revealing)

Privacy & medical professionalism

• Cheston 2012 systematic review, social media in medical education• breaches of professionalism (49% of articles)• user privacy (32%)• information quality (27%)

• Other concerns in the literature? • No time, lack of time, too many distractions• Distracted doctoring• Professional boundaries and confidentiality

• Personal boundary issues: relationships, private-public, ethical

• Social media redefines privacy in medical professionalism

Online medical professionalism: patient and public relationships. Ann Int Medicine April 2013

Patients need to ask good questions

• How can we participate in large social networks & protect privacy?– Privacy is a basic human impulse & central to patient care– Be aware of “context collapse” phenomenon on social sites

• Right to control our personal (health) information (& who sees it)

• Privacy in the past– Private information was locked away, and shredded– No longer appropriate for patients

See Pew’s document Privacy Management on Social Media

Privacy management & “context collapse”

Towards privacy literacy:

Privacy literacy refers to…the skills we need to engage fully in the digital world without compromising personal information …which

implies that individuals & organizations need a better grasp of privacy obligations & their importance in the digital landscape

— BC’s Privacy Commissioner

http://www.oipc.bc.ca/

• The web is a highly-social ecosystem & critical to life-long learning

• In medicine, 21st c. learning is highly social e.g., PBL, EBP

• Medicine is social but with exacting requirements for privacy

• Physicians must learn about privacy (and balancing its controls)

Some social media / privacy takeways

Social media & privacy literacy needed for the future of medical education…

Dean Giustini | UBC Biomedical Branch Librarian | Adjunct Faculty, UBC’s iSchool