MY SMART PHONE DOES WHAT WITH MY BLOOD PRESSURE DATA ???

1. MY SMART PHONE DOES WHAT WITH MY BLOOD PRESSURE DATA ??? Anita Fineberg, LL.B. CIPP/C Barrister & Solicitor President, Anita Fineberg & Associates Inc. Privacy by Design Ambassador eHealth 2013: Accelerating Change May 29, 2013

2. concepts Consumer concerns The mobile ecosystem Data collected by mobile apps App “privacy gaps” The vicious cycle Recommendations Conclusions Contact information

3. Consumer concerns • The three-quarters of Canadians who use mobile devices are increasingly likely to use privacy protection measures. • The majority of these people are likely to use a password to lock it (56%) and to adjust settings of the device or apps to limit the amount of personal information they share with others (53%). • This reflects significant increases in the use of such measures since 2011.

4. Consumer concerns • The majority of mobile users (55%) have decided not to install, or have uninstalled, an app because of the amount of personal information they would have to provide. • A smaller proportion (38%) have turned off the location tracking feature on their mobile device because they were concerned about others accessing that information.. Source: Survey of Canadians on Privacy-Related Issues, Phoenix Strategic Perspectives, Conducted for the Office of the Privacy Commissioner of Canada, January, 2013

5. Consumer concerns Source: U.S. Consumer Privacy Attitudes and Business Implications: TRUSTe®, July 2012

6. Consumer concerns • Consumers are particularly concerned about their confidential health information falling into the hands of employers or others Source: Blue Chip Patient Recruitment, Leveraging Mobile Health Technology for Patient Recruitment: 2012 [cited 2012 October], Cited in Deloitte: mHealth in an mWorld How Mobile Technology is Transforming Health Care – Deloitte 2012

7. The mobile ecosystem

8. Data Collected Can Include • Contacts • Photo Library • Videos • Camera/Video Sensor • Microphone • Text Messages • Dialer • Calendar Items • Location • Reminders • Social Integration Features • User entered info Source: A Brief Overview of the Mobile App Ecosystem: FPF (Future of Privacy Forum)/World Privacy Forum, September 2012

9. App “privacy gaps”

10. App “privacy gaps”

11. The vicious cycle

12. Recommendations Developers • Understand the environment in which the app will be used, by whom and the type of information required for its operation • Obtain privacy advice beforedevelopment begins • Assess“proof of concept” against legal requirements, best practices and user expectations • Build in privacy controls from the beginning • Ensure the app functions as stated in its privacy policy BOTTOM LINE WHAT PHI IS BEING COLLECTED, USED AND DISCLOSED, BY WHOM AND FOR WHAT PURPOSES?

13. Recommendations Consumers • Research mobile apps before installing them – credibility from development agreements; BlackBerry’s privacy notices service • Just because you pay for it doesn’t mean it is more privacy protective • Look for app “permissions” and opt-out features to verify that the app will collect PHI for purposes and perform only functions of which you are aware and approve • Watch out for collection of location data • Encrypt your phone data if storing PHI on the device • Understand the risks you are introducing to your mobile device

14. Conclusions • Consumer concerns over privacy affect both their initial downloading and continued use of health apps • Potential benefits of mHealth for both consumers and the health system more generally may be squandered if concerns are not addressed • Both the developer community and consumers have a role to play in creation of a trusted mHealth ecosystem

15. CONTACT INFORMATION ANITA FINEBERG, LL.B., CIPP/C BARRISTER & SOLICITOR PRESIDENT ANITA FINEBERG & ASSOCIATES INC. 416.762.4583 (B) 416.565.5007 (C) afineberg@sympatico.ca http://www.linkedin.com/in/anitafineberg