How social media is changing privacy in medicine


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April 16th, 2013 Evening rounds, St. Paul's Hospital Conference Centre

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How social media is changing privacy in medicine

  1. 1. “ How social media is changing privacy in medicine: some early ideas …Dean Giustini | UBC Biomedical Branch Librarian | Adjunct Faculty, UBC’s iSchool
  2. 2. What is social about social media? " media brings people together in order to chatoften, 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?
  3. 3. Why bother with social media?• Should everyone learn about the webs 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
  4. 4. 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
  5. 5. Privacy & HippocratesOn 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)
  6. 6. Altman’s (1975) theory of privacy• 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
  7. 7. Privacy Management Theory (Petronio, 2002)• Relationships managed by balancing privacy and disclosure• Privacy and disclosure function in “incompatible” ways• Personal & collective boundariesPrivacy (Concealing) Disclosures (Revealing)
  8. 8. 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
  9. 9. Online medical professionalism: patient and public relationships. Ann Int Medicine April 2013
  10. 10. Patients need to ask good questions
  11. 11. Privacy management & “context collapse”• 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 patientsSee Pew’s document Privacy Management on Social Media
  12. 12. Towards privacy literacy:Privacy literacy refers to…the skills we need to engage fully in thedigital 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
  13. 13. Some social media / privacy takeways • 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) Social media & privacy literacy needed for the future of medical education…Dean Giustini | UBC Biomedical Branch Librarian | Adjunct Faculty, UBC’s iSchool