What medical data are we collecting?
- hospitals - medical conditions
- doctors - medical history
- researchers - specific hypothesized causes of specific conditions
- data exhaust - fitbit, phone
- data exhaust - inferring from non-medical data
Where does it come from?
- data exhaust
- hospitals
- doctors
- research
How is it protected?
- private - HIPPA
- data exhaust is mostly public
- you agreed to this! coerced agreement
How is it used?
- medical history used to determine trends
- according to what you consented to
- secondary use
- consenting to all kinds of uses when data is collected generally
- policies for this? so you can consent to this
What are the concerns for privacy?
- biased hiring?
- biased insurance costs?
- sharing within specific groups
- what if researchers shared?
- secondary use - bias - assumptions being made
- used against particular communities
- comfort level
- individual rights to protection
What are the benefits to sharing?
- more data, better understanding of disease and correlates
- cure disease!
- understanding of effective medication
- collected data or data exhaust
- help people with your information - more benefit, same cost
- depends on how sharing is done
- collective benefit