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Wednesday, July 29 • 10:46 - 12:15
"Social Networking Sites: An Empirical Evaluation of the Relationship Between Privacy and User Behavior"

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Author: Francisco Grajales

Today’s interconnected democracies have adopted social networking sites faster than policy can adapt to meet the privacy values of their constituents. In the health sector, patients are sharing and managing their personal information on sites similar to Facebook but centred around disease (e.g., The Body for HIV). Through these sites, patients are sharing the medications they use, their respective side effects and their individual responses to treatment, just to name a few examples. 

Although this data sharing behaviour has been shown to make a positive contribution to the patient’s health and wellbeing, policy seldom protects the users who share these data from the retribution that may result when a third party gains access and actions the data that is found on a user’s profile. This information can be a diagnosis, such as depression, or a common symptom, such as recurrent migraines. At stake is not whether the data shared should be used for commercial purposes; rather, it is about how the laws of, for, and by society can delicately balance the needs of capitalism (the sale of goods and services) whilst protecting its ideals - maintaining citizen rights, freedoms and preventing discrimination. This research aims to build a foundation for policymakers to harmonize the tensions surrounding health data privacy from different perspectives - the patient, the law, and the corporation. 

Objective: My dissertation explores the relationship between privacy and social networking site user behaviour. It is an evaluation of: 1) user incentives for sharing data on health-related social networking sites; 2) the relationship between data sharing practices, anonymity, and the perceived risk of future retribution by third parties (employers, insurance companies and government entities); and 3) how policy and data protection legislation may balance the universal human-right to privacy within a capitalistic democracy. 

Methods: A partnership has been established between the University of British Columbia’s Industry Liaison Office and PatientsLikeMe Inc. in Cambridge, MA. Under this partnership, PatientsLikeMe has shared the results of a survey on Privacy measures that was conducted on its users on behalf of the US National Academies of Sciences. Under this agreement, PLM has also shared anonymized user profile data. Data analyses, including descriptive statistics and regression modelling are being conducted using the XLStat software. Results have been ethically validated and will be reported in congruence with the Checklist for Reporting Results of Internet E-Surveys. 

Preliminary Results: A total of 2,712 PatientsLikeMe users completed the survey. 2,125 (78%) were from the USA and 2,045 (75%) of them were female. 1,337 (49%) of users did not share their profile with a third party; including spouses, friends, or clinicians. Overall, 1,823 (67%) and 1,361 (61%) of users believed that their profile data would be used to deny them healthcare benefits or would limit job opportunities in the future, respectively. Despite this, 2550 (94%) of users would be willing to share their data anonymously to improve the care of other patients with similar conditions. Users from countries with Universal Healthcare Coverage shared an average of 30% more data on their profiles than their American counterparts. 

Conclusions: These preliminary results strongly suggest that American users share significantly less data than their international counterparts when controlled for quality of life, income, gender and health insurance coverage. This may be due to the fear of retribution by future employers and health insurance companies. Regardless of nationality however, two in every three patients want their data to be used anonymously to improve the care of future patients. Further research will be required to explore whether these attitudes are a direct result of data protection policies in different geographical contexts. 

avatar for Francisco Grajales

Francisco Grajales

Google Policy Fellow, ADB

Wednesday July 29, 2015 10:46 - 12:15
(8th Floor) TRS 2-166 (Ted Rogers School of Management) 55 Dundas Street West, Toronto, ON M5G 2C3

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