The Battle Between Big Data and Big Privacy. White Paper. by Jessica Santos, Ph.D. November 2014

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1 White Paper Catalysts driving successful decisions in life sciences. The Battle Between Big Data and Big Privacy by Jessica Santos, Ph.D. November 2014

2 Undoubtedly, Big Data is helping researchers beyond their dreams. As one of the most mentioned buzzwords in the market research industry, it is impossible to avoid the phrase Big Data at any major conference, keynote speech or business meeting at the moment. Big Data is promised to yield big savings 1 and is transforming healthcare ; 2 it is certainly the future with its big benefits. 3 However, Big Data comes with a big question privacy. Most data subjects (that is, you and me, ordinary people) are unaware of how our personal data is collected (not only by providing our details while shopping online, but also simply by some browsing activities), stored (in which country), transferred (where will it go) and used (where it is going). Simply asking data subjects to click on lengthy pages of I agree with Terms and Conditions before allowing them to use a service is no longer sufficient from the Federal Trade Commission s (FTC) perspective. The Big Privacy movement already has advocates and increasingly bigger fines. Will Big Privacy kill Big Data? Will consumers let go of their privacy for the benefits of Big Data? Will the few privacy advocates talking about privacy violations reverse the trend? Big Data Data, data, everywhere Some argue that the focus of the Big Data phenomenon has already moved from Should we adapt Big Data into our business? to How can we use Big Data to make our business grow? We have moved from a data-scarce era to an era where we are being flooded with more data than we can comprehend. Undoubtedly, Big Data is helping researchers beyond their dreams: Comprehensive medical records covering a wider population, holistic healthcare evaluation from primary care to secondary care, and multiple perspectives of a single case are all easily available. Expenditure relating to Big Data is expected to grow from $27.7 billion in 2012 to $54.4 billion in 2016, and thanks to Big Data 4.4 million jobs will be created globally by Big Data will benefit not only the private sector but also large public authorities like the Food and Drug Administration (FDA), which already has plans for their Big Data ambitions. 5 SEER-Medicare a combination of National Cancer Institute registry data and enrollment and claims data from Medicare has allowed researchers to calculate the risk of hospitalization after prostate biopsy, the cost of breast cancer recurrence and other healthcare metrics. Such studies have implications for the commercial success of drugs but exist beyond the control of pharma companies. By working with the holders of real-world data, drug developers can at least ensure they know how their products fit into treatment pathways. This can ensure companies are prepared in the event a third party presents data questioning the safety or efficacy of a drug. The FDA now has access to a wealth of safety data with the Mini-Sentinel database, which contains records on more than 178 million individuals, 4 billion medication dispensing and 4.1 billion unique medical encounters as of July The data is currently helping the FDA assess rates of bleeding among patients taking Boehringer-Ingelheim s Pradaxa. The FDA might be able to identify groups of high-risk patients by diving in Big Data. The FDA set up the database in the wake of safety concerns involving Merck s arthritis drug Vioxx. The FDA is also making raw downloads and application programming interfaces (APIs) of adverse events data available publicly.

3 Do data belong to the individual or to the company who collected and analyzed it? Big Privacy The big questions often ignored by Big Data worshippers are, where are these data coming from, and do we have the required explicit informed consent in place from all of these sources? One common reason this question is swept under the carpet is the answer: We don t know. Data on your desk right now could have been transferred from hundreds of different data brokers already; maybe they are part of an extraction from a larger database so that the original source becomes untraceable. However, unknown doesn t mean it is legal, ethical or even totally anonymous. Especially with Big Data analytics, some argue that anonymised data no longer exists. 7 The next big question is, what can or will Big Data analytics do? If these actions involve any possible disadvantages to the data subject even in the future (increased insurance premium or employment discrimination), or occur without proper consent (or simply discontent by the data subject), Big Privacy will likely win. Facebook 8 and Google 9 have made headlines because of fraud claims over data or privacy violations. And privacy advocates and the FTC have called fitness tracking apps 10 a nightmare and very disturbing. After all, whose data is it? Do data belong to the individual or to the company who collected and analyzed it? Ownership of a database is often sold with a price tag, but what percentage went to the individual data subject? In the battle with Big Data, individuals do not need to be identified in order to be placed in a disadvantageous position. For example, if all de-identified medical records were openly available, will health insurance premiums increase simply because we live in an area with a high prevalence of smoking and obesity? Even when medical records are available only for public sector research, a sharp drop in women reporting postnatal depression has been observed because of the fear that their babies may be taken away. Or will we refuse to be treated by an HIV-positive nurse, 11 or not go near a hospital with a higher-than-average rate of hepatitis infections? Given enough money, resource and time, all de-identified data can be identified again. More frequent privacy audits and increasingly hefty fines seem to be the answer to this battle. Many big names have been caught by Big Privacy in an effort to protect user data. Snapchat settled with the FTC for a recordbreaking $22.5 million in May 2014 over charges that the company inaccurately claimed that messages disappeared once they were sent. 12 Ireland s data protection commissioner will audit companies such as Apple, Adobe and Yahoo, which have offices in Ireland, to ensure their use of online data complies with the EU s strict privacy laws. 13 Regulators are exercising their power by amending laws, increasing fines and offering consumers compensation globally. 14 Some practitioners claim these measures might bankrupt tech companies. 15 What does the future hold? Should transparency be the new privacy? This might be a compromise between Big Data worshippers and Big Privacy advocates. A well-written, detailed privacy policy including all aspects of privacy (what will be collected, how it will be used, stored, transferred, processed, etc.) is a good start, but in reality it is rarely read by consumers. Forcing consumers to read hundreds of pages of privacy policy or carefully select their individual privacy setting before any activity seems to be impractical either. Perhaps an industrywide data transparency principle would better inform consumers and ease their concerns about privacy. Another idea is to let consumers decide who buys their data. Forbes reported on a working paper that considers a market where firms set prices and disclosure levels for consumer information, and consumers observe both before deciding which firm to patronize and how much personal information to provide. The paper, Competing with Privacy, by Roman Casadesus-Masanell and Andres Hervas-Drane of Harvard, looks at how the disclosure of personal information (in privacy policies and via marketing) affects economic competition. 16 After all, AT&T is already offering $30 per year for your personal data and all

4 Security and accuracy are the two main concerns from Big Privacy advocates, especially in the healthcare space. transactions. 17 Meanwhile, compliance officials say the entire technology industry is struggling to keep up with the relationship between technology and privacy. The trend is moving toward giving consumers control of their own data and allowing them to change their minds about what they share in a swift, pain-free manner. Regulations always move slower than technology; this time, Big Data technologists can proactively work with Big Privacy policymakers to address concerns and issues as they arise. What shall healthcare market researchers do? Big Data has certainly gained the attention of healthcare market researchers. It is important to engage practitioners, patients and regulatory bodies regarding the benefits of participating in Big Data research by conducting individual needs assessments. Stakeholders need to learn what s in it for them, and an awareness campaign with positive stories from data subjects benefiting from Big Data is a good start. Security and accuracy are the two main concerns from Big Privacy advocates, especially in the healthcare space. If Big Data practitioners can gain the trust of practitioners, patients and regulatory authorities by safeguarding a transparent process for collecting accurate, accessible data, we might see a happy ending of both Big Data and Big Privacy winning! References 1 Bates DW, Saria S, Ohno-Machado L, Shah A, Escobar G. Big Data In Health Care: Using Analytics to Identify and Manage High-Risk and High Cost Patients. Health Affairs July;33(7): Weil AR. Big Data in Health: A New Era for Research and Patient Care. Health Affairs July;33(7) Sarasohn-Kahn J. Big Data and Dark Data for Health. The Huffington Post. 18 July Gartner Says Big Data Creates Big Jobs: 4.4 Million IT Jobs Globally to Support Big Data by Press Release. 22 Oct Baker P. The FDA s Big Data Hunt for Drug Problems in Your Medical Records. FierceBigData. 23 July Mini-Sentinel Distributed Database At A Glance. Glance.aspx. Accessed 5 Aug Anonymisation: How Anonymous Is Anonymous? IAPP Europe Data Protection Intensive 2014, 29 April-1 May, London. https://www.privacyassociation. org/media/presentations/14dpi/dpi14_ Anonymisation_PPT2.pdf 8 Gullo K. Facebook Must Again Face User Fraud Claims Over Data. Bloomberg. 8 May Whitney L. Google Pays $1.4 Million Fine Over Italian Street View Snafu. CNET. 4 April Peterson A. Privacy Advocates Warn of Nightmare Scenario as Tech Giants Consider Fitness Tracking. The Washington Post. 19 May Anderson R. Why Anonymisation Doesn t Protect Privacy. https://www.privacyassociation.org/media/ presentations/14dpi/dpi14_keynote_randerson_ PPT.pdf 12 Wortham J. Off the Record in a Chat App? Don t Be Sure. The New York Times. 8 May Scott M. Irish Regulator Finds Himself at Heart of Privacy Debate. The New York Times. 28 May Lim J. South Korea Increases Data Breach Fines, Lowers Liability Threshold. Bloomberg. 19 May Singer N. Federal Regulators Seek to Stop Sale of Students Data. The New York Times. 23 May Gerdeman D. Companies Should Compete for Your Privacy. Forbes. 19 May Big Data, Privacy and Intangible Assets. IAPP Data Protection Intensive April-1 May 2014, London. https://www.privacyassociation.org/media/ presentations/14dpi/dpi14_big_data_intangible_ PPT.pdf

5 For more information, please visit About Kantar Health Kantar Health is a leading global healthcare consulting firm and trusted advisor to many of the world s leading pharmaceutical, biotech and medical device and diagnostic companies. It combines evidence-based research capabilities with deep scientific, therapeutic and clinical knowledge, commercial development knowhow, and brand and marketing expertise to help clients evaluate opportunities, launch products and maintain brand and market leadership. Kantar Health deeply understands the influence of patients, payers and physicians, especially as they relate to the performance and payment of medicines and the delivery of healthcare services. Our advisory services, built on a solid foundation of market research and data, span three areas critical to bringing new medicines and pharmaceutical products to market commercial development, clinical strategies and marketing effectiveness. Kantar Health operates in more than 40 countries and employs more than 600 healthcare industry specialists and practitioners, including a high number of medical doctors, epidemiologists, PhDs, PharmDs and pharmacists, and biologists, biochemists and biophysicists. We work across the product lifecycle, from preclinical development to launch, and are experts at bringing multiple stakeholders together to advance the commercialization of pharmaceutical products. Our team acts as catalysts to successful decision making in the life sciences industry, helping our clients prioritize their product development and portfolio activities, differentiate their brands and drive product success post-launch. Kantar Health is part of Kantar, the data investment management division of WPP. About the Author Jessica Santos, Ph.D. Dr. Jessica Santos is the Global Compliance Director in Kantar Health, the largest custom market research company focused on the life sciences industry. She is primarily responsible for providing oversight and support across the 40+ Kantar Health global offices in the areas of regulation, interaction with clients, suppliers and others within Kantar Health, Kantar and WPP. Dr. Santos is responsible for maintaining, anticipating and coordinating all activities with regard to compliance laws/regulations, industry guidelines, pharamcovigilance and client contracts, defining and driving the execution of Kantar Health s Quality Strategy our approach to measuring and improving our quality efforts. Dr. Santos is an experienced statistician, analyst, methodologist and market research scientist. She gained her reputation through her publications and professional committee work in the industry. She is a frequent speaker and contributor in major conferences and has a Ph.D. in Marketing, an MRS fellowship and Chartered Marketer status. Dr. Santos is a member of UK Research Ethics Committee, EphMRA, BHBIA and PMRG Government Affairs Committee, reviewer and co-chair of ISPOR, and MRS Professional Development Advisory Board and Examiner. If you would like us to act as catalysts for you, contact us at

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