Wearables, Information Sharing and Research in a Big Data World - Balancing Risks and Rewards

Transcription

1 1 Wearables, Information Sharing and Research in a Big Data World - Balancing Risks and Rewards TIMOTHY BANKS DR. PAUL KURDYAK MATTHEW SWARNEY DENTONS CANADA LLP CAMH & ICES MOTOROLA SOLUTIONS CANADA INC.

2 Framing the issue 2 Access to large sets of quality data from multiple sources that can be used for research in a privacy protective manner is a significant challenge for big data medical research. Wearables, (and the information they produce and the opportunities for sharing that they create) are the it technology of the day in a myriad of fields and applications. Can these devices help generate quality data by leveraging participation from the broader community? Can they be used in a privacy protective way? Or are the barriers to use just too high?

3 Panel objectives 3 Wearables what are they and why now? The Institute for Clinical Evaluative Studies stories that data tell The Wearables challenge culture, quality and privacy The Law constraint or vacuum?

4 What are wearables? 4 Body-worn computers Low power devices Equipped with sensors Networked through WIFI, Bluetooth, Near Field, GPS & Broadband Networks Essentially any device that can be both worn by a human and that can collect personal data Jozefmicic Dreamstime.com - Wearable Technology Smart Devices Photo

5 Historical Context 5 Wearables have been around for longer than we perhaps have considered

6 Very Historical Context 6

7 Commercial Context 7 Significant investment in these technologies Today, 68% of global technology and business decision-makers say that wearables are a priority for their firm, with 51% calling it a moderate, high, or critical priority. Forrester Research, December 9, t+of+global+tech+and+business+decisionmakers/-/e-pre7464

8 Use Context 8 Consumer Gaming Fitness Apps Environmental feedback Controlling IOT devices Health Google Glass to display patient information during procedures Remote diagnostic tools when transporting patients Monitoring and adjusting for therapy Sensoria: Philips future-ofhealthcare/index-video.wpd

9 Use Context 9 Employment Sensors in the lanyard can detect type of activity (sitting, standing, typing, walking) and record duration of employee interactions. Public Safety Body-worn cameras to record interactions between police and citizens Heads worn displays on conditions / building layout for firefighters Source: /02/ pdf

10 Why now 10 Combination of: Size (smaller than ever and getting smaller by the day) Amount (devices can collect more data than ever before and growing larger by the day) Type (nature of data collected growing by the day) Speed (how fast the data can be transmitted) Presents a number of significant privacy challenges around fundamental principles including consent, transparency, control and sensitivity

11 Hypothetical uses of wearables 11 Generate quality data through participatory involvement? Is it any better than self-report? Behavioural management / change and impact on care? E.g. RCT of modified watch with wristband to detect sweat ETOH levels, and use of GPS to prompt individuals to leave drinking establishments to stay on self-defined alcohol consumption goals Little evidence to date Much to question

12 Data Matters 12 The patient story data are routinely captured, but reside in siloes With data, we can tell stories that can provide meaningful targets

13 Suicide Deaths Among Youth in 13 Northwest Ontario are 6X higher per 100,000 specified population 35 Exhibit Standardized rate of death by suicide per 100,000 population aged 10 to 24 years, by Local Health Integration Network, in Ontario, 2007/08 to 2009/ Erie St. Clair South West Waterloo Wellington Hamilton Niagara Haldimand Brant Central West Note: Rates were standardized by age and sex to the 2002 Ontario population. Mississauga Halton Toronto Central Local Health Integration Network Central Central East South East Champlain North Simcoe Muskoka North East North West

14 Having Schizophrenia at 14 First Heart Attack 50% decreased access to care Cardiologist Follow-up 50% increased mortality 1 Cardiac Procedures AMI Mortality Odds Ratio (OR) SCZ vs. non-scz 1 Kurdyak et al., Schiz Res; 2012; 142_52-7

15 The ICES Context 15 Privacy Management Relationship Management Data Expertise How can these circumstances be applied to Wearables?

16 Privacy law a barrier? 16 Canadian federal and provincial privacy legislation is designed around two concepts: (1) consent (notice & choice) and (2) appropriateness of the purposes (to the Commissioner ) The underlying policy assumption is that the individual should have the right to control the collection, use and disclosure of his or her personal information subject to defined and limited exceptions An exception is health research Generally express consent is required for direct collection and use of PHI for health research But collection without consent for health research can occur with research plan and ethics board approval

17 Meaningful consent 17 Consent must be meaningful free and informed Challenges Immediate relevancy: Must deliver relevant information for immediate choice and immediate circumstances Future relevancy: Must deliver relevant information to have people examine how the consent may constrain future choices and affect future circumstances Foreseeable risks, harms, inconveniences and expected benefits. Lots of research on the problems of predicting accurately how you will feel about a situation in the future Must be delivered in a way that is understandable

18 Quid pro quo 18 Participatory research could involve sharing results with individuals Complicates consent process because may affect the person and his or her family in a number of ways Psychological impact Family members with similar or inferred dispositions Genetic discrimination Insurance coverage Employment

19 No consent? No problem? 19 Personal Health Information Protection Act (Ontario) Research ethics board must consider (s. 44(3)): Is the PHI necessary to the research objectives? Will there by adequate safeguards to protect privacy and confidentiality? The public interest in conducting the research and the public interest in protecting the privacy of the individuals whose personal health information is being disclosed. Is obtaining the consent impractical? Personal Information Protection and Electronic Documents Act (Federal) It is impracticable to obtain consent The organization informs the Commissioner of the disclosure before the information is disclosed

20 Related Barriers 20 No legal obligations to break down data silos and data stewards without incentive to make data available Compounded by commercial incentives for data hording Research institution / public hospital? Or commercial enterprise? Legal uncertainty about justifications for use of PHI in identifiable form Legal uncertainty about when data is sufficiently de-identified

21 Interoperability? 21 Freedom of Information and Protection of Privacy Act (B.C.)(s. 35) Must require individually identifiable information or approval of the Commissioner Data linking must be non-harmful to the individuals and the benefits are in the public interest Satisfactory security and confidentiality Removal or destruction of individual identifiers at the earliest reasonable time Prohibition of any subsequent use or disclosure

22 Summing it up 22 Where are we? Help! Technology has outstripped the applicability Where are we going? Double help!! Application of that information gathering in a meaningful way to achieve intended outcomes Where do we want to go? Triple help!!! Benefits the patient Better outcomes Humanizes rather than dehumanizes

23 Thank you 23 Timothy M Banks Partner Dentons Canada LLP E: timothy.banks@dentons.com Tel: Dr. Paul Kurdyak Director, Health Outcomes and Performance Evaluation (HOPE) Research Unit Centre for Addiction and Mental Health Core Senior Scientist and Lead, Mental Health and Addictions Research Program Institute for Clinical Evaluative Sciences (ICES) E: Paul.Kurdyak@camh.ca Matthew Swarney Director Government Affairs Motorola Solutions Canada Inc. E: matthew.swarney@ motorolasolutions.com Tel: (905)