IQVIA is a leading global provider of advanced analytics, technology solutions, and contract research services to the life sciences industry. IQVIA’s Primary Intelligence business helps pharmaceutical companies answer key business questions that drive drug innovation and new revenue streams.
IQVIA Primary Intelligence engages in extensive primary market research (PMR) with surveys that collect reams of data. Much of this data is about patients and is thus highly sensitive.
Ensuring individual privacy and preventing any one patient from being identified from their data is critical. IQVIA employs its own internal policies around data privacy and must also comply with a growing number of privacy regulations being instituted around the world.
Privacy regulation creates new compliance requirements
One such regulation is the General Data Protection Regulation (GDPR), implemented in Europe in 2018. GDPR established a new ruleset for processing the personal data of individuals in the EU. This regulation had a significant impact on primary market research in the pharma business because the health information gathered is so sensitive.
GDPR stipulates that patient health data is subject to special protection and demands that it be treated with sensitivity. Few patients want to explain their medical condition to the public, even if it is not a sensitive condition. In some cases, the damage can be serious and measurable, such as when a data privacy breach reveals to the management of an airline company that a pilot has been treated for depression for the last three years.
“Privacy Analytics has equipped us to continue serving our pharma clients efficiently while meeting regulatory requirements and building trust with our key stakeholders,”
VP and General Manager, IQVIA
Ensuring privacy requires specialized expertise and solutions
Even when patient health data is aggregated and sensitive information removed, there is still a chance that a patient in the aggregated data could be identified. As a rule, physicians completing a market research survey are not allowed to provide any company (such as IQVIA) with identifiable (or re-identifiable) patient data. Doctors must be sure that information provided to IQVIA researchers remains in line with the law and the ethical requirements of their profession.
A number of factors can make patient identification possible. These include excessive data collection, inclusion of the precise dates of hospital admissions and treatments, and questions that lead to the collection of outliers. Patients are also more likely to be identified when the population is small (as is the case with populations of rare disease patients) and the data is linked to external data sources.
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Driving business value by protecting privacy
To ensure compliance with regulations such as GDPR and to fulfill its own internal policies around privacy protection, IQVIA Primary Intelligence turned to IQVIA company Privacy Analytics.
Privacy Analytics has a team of over 100 experts who advise clients daily on even the most complex business challenges related to sensitive data. This deep expertise and experience was honed by assessing and anonymizing thousands of datasets over 14 years in business.
IQVIA wanted Privacy Analytics to develop a solution that would provide end-to-end patient anonymity in its primary intelligence business and PMR processes. What made this initiative challenging is that PMR methods and questionnaires can vary significantly across a range of diseases with different levels of prevalence, and across geographies and regulatory jurisdictions.
In every client engagement, Privacy Analytics works side by side with the client organization to gain a comprehensive understanding of its business, its client base, data stakeholders, and the regulatory or business environment in which it operates. Privacy Analytics also looks carefully at how data is handled by the client and for which purpose.
This understanding results in a tailored engagement model and solution that is aligned with the needs of each client. Privacy Analytics’ methodology and expertise ensures that the privacy of people represented in sensitive datasets is protected while preserving the utility or research value of the data. Context matters and varies with each client.
“Privacy Analytics provided us with reliable business guidance to help our pharma clients safely innovate with sensitive information to drive greater advances in patient health,” said Charlotte Langtved, VP and General Manager at IQVIA.
In addition, Privacy Analytics developed easy-to-use, robust, and flexible technologies and provided training in their use. The IQVIA Primary Intelligence team can now assess, measure, and assure patient privacy on its own when designing any PMR study.
Achieving compliance, upholding ethical standards, earning trust
Thanks to Privacy Analytics, IQVIA Primary Intelligence is thinking prospectively and building privacy into its processes to help its clients safely accelerate drug innovation. This anchors its entire business model and creates a strong foundation for future growth.
Researchers are now able to reduce the chance they will unintentionally gather re-identifiable information about patients without their consent when health-care professionals provide patient record forms. In cases where direct patient questionnaires are very detailed, researchers can ensure projects are designed to reduce the likelihood of patient re-identification.
“Privacy Analytics has equipped us to continue serving our pharma clients efficiently while meeting regulatory requirements and building trust with our key stakeholders,” said Langtved. “We now have a PMR process that is fully compliant with GDPR, that is auditable and defensible, and that also upholds the highest ethical standards of the healthcare profession.”