Long-Term Future of Health Privacy and Security Why It Matters to You Now W. Ed Hammond, PhD, FACMI, FAIMBE, FHL7, FIMIADTMI, Duke Medical Center
Privacy • Why do you have a right to privacy? • What is privacy? What is its domain? • What does privacy cost? • Privacy is very complex.
Privacy is a changing world. Where is the balance point? Limits research and knowledge acquisition Access to care, jobs, insurance limited Health data available to anyone Total control of data by patient
Privacy’s Changing Face • Past • Paper records • illegible handwriting • Level of documentation • Town newspaper published list of those hospitalized • Patients were passive about their care • Gossiping was the way most news spread • Worrying about privacy was in the future
Privacy’s Changing Face • Present • Vocal group of privacy advocates • HIPAA • Patient data on-line, accessible via Internet • Laws protect privacy • Strong position of patient control of data • Movement to data aggregation of a single patient’s data • Reuse or continuing use of data • Hackers and data compromise make news
Privacy’s Changing Face • Future • Big Data – accelerate acquisition of knowledge • Health Information Exchange • Aggregation of data • Learning Health System • Social Networking • Video everywhere • GPS • Global connectivity
Privacy Issues • Universal Unique Identifier • Responsible access and use of data for research • Access to all data for effective treatment • Opt-in and Opt-out • Access to Genetic Data (not just you) • Patient Informed • Harm vs Invasion of privacy
What then? • De-identification doesn’t work. • Punish wrongdoers rather than trying to enforce privacy. • Focus on responsible use of data. • Who owns the data is an inappropriate question.