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Privacy-by-design for patient organization data initiatives
Prioritizing compliance and patient trust while furthering research
Sep 25, 2025
Patient organizations often seek data to drive empirical research, insights, and advocacy on behalf of their patients through different patient data initiatives. IQVIA’s recent Patient Data Initiatives blog series covered:
- Why now is the time for patient data initiatives
- Why the potential benefits are greater than ever before
- Understanding the evolution of options available for patient data initiatives
- Defining a vision and articulating to stakeholders
- Determining how to make your vision sustainable
- Figuring out where and how to get the data you need
- Selecting which technologies can empower your vision
Underpinning any patient data initiative is the need for careful attention to data privacy, to ensure regulatory compliance and to reinforce patient trust. The myriad choices a patient organization makes in establishing a patient data initiative can have secondary effects on efforts to manage privacy, whether an expanded set of regulations to consider with international data collection or transfer, managing consent and data deletion, or enabling de-identification or anonymization for different data types, including text, images, and omics data.
Privacy considerations for patient data initiatives
Data privacy for patient organizations can consider a variety of aspects of a patient data initiative:
• Regulatory expectations: Especially for data sourced internationally, understanding the regulatory requirements associated with data from different sources can be a challenge. The contrasting expectations, definitions, and practices for different regulations can create complexity, especially when targeting a streamlined initiative.
• Identifiability and data needs: For many initiatives, the goals can be achieved with the use of fully de-identified or anonymized data, which when created appropriately and defensibly can bring the derivative data outside the scope of privacy regulations, reducing the operational burdens in storing and sharing that data while effectively protecting patient privacy. Further, the privacy principle of data minimization encourages organizations to share the minimum necessary patient-derived data in order to achieve an analysis goal. Understanding the utility needs associated with the data initiative allows an organization to define an approach that is appropriately balanced between data needs and the identifiability of the data being shared.
• Stakeholder communications: Communicating transparently with patients and caregivers contributing data is essential to trust, and ultimately the success of an initiative. Appropriate communication about how data will be collected, protected, and used is a key component of this transparency.
Why privacy is foundational for patient organization-led data initiatives
Focused attention to data privacy can bring value by informing the approach and design of a patient data initiative, to provide tools or services to support privacy-by-design, and ensuring privacy measures are effectively communicated to patients, caregivers, healthcare providers, and partner organizations to build trust. A strong privacy approach will prioritize protection while ensuring operational aspects of a patient data initiative are minimally impacted. Data privacy support can take the form of:
• Program design, ensuring privacy considerations are flagged, any necessary analyses are planned, and the right internal and external stakeholders are engaged.
• Privacy analysis, including impact assessments, de-identification or anonymization assessments, or policy reviews.
• Privacy-enhancing technologies, like tokenization, linkage, or de-identification technologies, or combination of them that best serve the organizational needs and roadmap.
With strong privacy practices, the research goals of a patient organization can be supported while ensuring regulatory compliance and maximizing patient and public trust.
To learn more about IQVIA’s solutions for patient organizations, contact us at ppa-contact@iqvia.com.