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 Source:A Brief Overview of the Mobile App Ecosystem: FPF (Future of Privacy Forum)/World Privacy Forum, September 2012 User entered info

9. “PRIVACY GAP”IMPACT ON CONSUMERS Lack of a privacy policyNo information on what information the app collects, uses, discloses, to whom and for what purposes and for how long Failure to seek express consent for the collection of PHI (initially and when the purpose of the use and/or disclosure changes) Sensitive information may be collected, used and/or disclosed for purposes unexpected by the consumer Inability to change default settingsNo choice with respect to the use of their information; i.e. no ability to “opt- out” APP “PRIVACY GAPS”

10. “PRIVACY GAP”IMPACT ON CONSUMERS Failure to inform consumer if app accesses local resources (e.g. device address book, contacts, camera, photos), for what purposes and obtain consent prior to access Unaware that other PI/PHI may be collected and used, other than that required for the operation of the app No contact information so that a user may have their privacy questions and/or concerns addressed Uncertainty related to whether the app is collecting, using and/or disclosing their information in a manner consistent with their understanding and/or expectations

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 before development 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