1. Healthcare Privacy: The Perspective of a Privacy Advocate
Deven McGraw

2. The Health Privacy Project at CDT
Health IT and electronic health information exchange have tremendous potential to improve health care quality, reduce costs, and empower consumers.
But little progress has been made on resolving the privacy and security issues raised by e-health.
Project’s aim: Develop and promote workable privacy and security policy solutions for personal health information.

3. People want Health IT - but also have significant privacy concerns
Survey data shows the public wants electronic access to their personal health information.
But a majority - 67% - also have significant concerns about the privacy of their medical records (California Healthcare Foundation 2005).

4. Consequences of Failing to Act
Good health care depends on accurate and reliable information.
Without privacy protections, people will engage in “privacy-protective behaviors” to avoid having their information used inappropriately.
1 in 6 adults withhold information from providers due to privacy concerns. (Harris Interactive 2007)
Persons in poor health, and racial and ethnic minorities, report even higher levels of concern and are more likely to engage in privacy-protective behaviors. (CHF 2005)

5. Health IT Can Protect Privacy - But Also Magnifies Risk
Tools of technology can better protect privacy
But moving health information into electronic form - in the absence of strong privacy and security safeguards - magnifies the risks.
Recent thefts of laptops, inadvertent posting of data on the Internet
Cumulative effect of these reports deepens consumer distrust

6. A Comprehensive Approach is Needed
Privacy and security protections are not the obstacle - enhanced privacy and security is an enabler to health IT.
A comprehensive privacy and security framework is needed to facilitate the adoption of health IT and health information exchange.
Rules should be tailored to different contexts.

7. What Does a Comprehensive Framework Look Like?
Includes core privacy principles, incorporates trusted network design characteristics, and establishes oversight and accountability mechanisms. (Markle Foundation)
The framework should also cover generally accepted fair information practices that have been used to shape policies governing uses of PHI in a variety of contexts.
No single formulation - but Markle’s Common Framework provides a good model.

8. Common Framework Principles
Openness and transparency
Purpose specification and minimization
Collection limitation
Use limitation
Individual participation and control
Data integrity and quality
Security safeguards and controls
Accountability and Oversight
Remedies

9. Role of HIPAA in New Environment
HIPAA Privacy and Security Rules reflect elements of this framework and provide important protections governing access, use and disclosure of PHI by health system entities.
But the regulations are insufficient to cover the new and rapidly evolving e-health environment - particularly the migration of health information out of the health care system.
Effective enforcement is also lacking.

10. What About Patient Consent
Individual control is an important component of fair information practices - but it is just one component.
In the context of PHRs and accounts in health record banks, consumer control is the model - and the rules that govern these tools should enforce that principle.
Will that become the prevailing model of health information exchange?

11. Patient Consent (cont.)
For records held by health system entities, providing greater authorization rights is not the best way to protect privacy and security. Data stewardship responsibility should primarily vest with the entity holding the data.
Places most of the burden of privacy protection on the individual at a time when they are least able to make complicated decisions about the use of their data.
Research shows that patients do not read consent forms - and if they do read them, they frequently do not understand them and inherently believe they protect privacy even in cases where the opposite is true.

12. Consent (cont.)
Blanket authorizations or easy “check the box” electronic forms in particular can easily become shields for inappropriate uses.
Relying on consent relieves entities of the burden of adopting strong privacy and security policies and practices.
There is a role for consent - and we want consumers to be paying attention in those moments (no “consent fatigue”).

13. Consent (cont.)
The adoption of a comprehensive privacy and security framework that places clear limits on the access, use and disclosure of identifiable health information - with aggressive enforcement - will better protect privacy in e-health systems.
But health systems should be engineered to honor (and appropriately manage) patient consent where such consent is legally required or voluntarily sought.
Is there room for a hybrid approach?

14. Consent (cont.)
We need to consider the appropriate role for consent - particularly with respect to information that is particularly sensitive and stigmatizing.
HHS should follow-up on NCVHS recommendations concerning the right to restrict information in sensitive categories.
Consider work already being done in state and regional health information exchanges.

15. For privacy to enable health IT, we need to “enable” privacy