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Director, PSS Rare Disease Data Strategy, Architecture and Governance

Mass Digital Health

Job title: Director, PSS Rare Disease Data Strategy, Architecture and Governance

  • Location: Morristown, NJ

About the Job

Sanofi's Rare Disease Patient Support Services (PSS) organization operates at the intersection of clinical complexity, patient intimacy, and data intensity unlike any other therapeutic area in the enterprise. This is a transformational, leadership position serving as the single point of end-to-end accountability for how PSS data is structured, governed, protected, and converted into meaningful insights, automated actions, and improved outcomes across both the post-enrollment, prescription and patient journeys.

PSS Rare Disease is the only therapeutic area with patient-specific ordering and infusions and direct data input into the Sanofi iCare+ CRM. The data landscape spans 15+ specialized datasets, complex specialty pharmacy integrations, longitudinal rare disease patient management, and hundreds of data points that — only when properly structured — become the engine behind automated workflows, PSS interventions, HCP portals, and performance management solutions.

This role is not a policy-defining function alone. It is a technical implementation role that co-designs, enforces, and continuously evolves the data foundation PSS depends on. The Director must be deeply technical enough to challenge IT norms while remaining business-aligned and influential enough to prioritize value — serving as a co-designer and decision-maker, not a requestor, in all data-related discussions.

Join the team transforming care for people with immune challenges, rare diseases, cancers, and neurological conditions. In Specialty Care, you'll help deliver breakthrough treatments that bring hope to patients with some of the highest unmet needs.

About Sanofi

We're an R&D-driven, AI-powered biopharma company committed to improving people's lives and delivering compelling growth. Our deep understanding of the immune system — and innovative pipeline — enables us to invent medicines and vaccines that treat and protect millions of people around the world. Together, we chase the miracles of science to improve people's lives.

Main Responsibilities

Digital & Data Strategy Leadership

  • Own the PSS perspective on the Digital roadmap and align all data-producing digital initiatives with PSS business objectives

  • Bridge the enterprise teams of Digital/IT, US Data Management, Product Services and PSS Operations, ensuring PSS requirements are prioritized

  • Provide strategic oversight of core data platforms and emerging technologies

  • As the primary liaison, represent PSS data interests to PSS business stakeholders, IT/Digital, Risk/Compliance groups, and in enterprise governance forums

Data Architecture & Platform Integration

  • Design and own the PSS perspective on end-to-end PSS data architecture spanning core data platforms, SP systems, data mesh, and integrated enterprise analytics environments to achieve maximum interoperability

  • Define how data is structured across the prescription, buy-and-bill, and hub patient journey

  • Architect, document and represent to non-technical audiences how hundreds of data points — status updates, denial codes, missing information flags, transaction messages — are integrated for maximum utility to facilitate insights, automation, and action

  • Define integration patterns with IT/Digital including APIs, data pipelines, and controlled data sharing zones

  • Manage and evolve growing datasets including EHR, evolving digital ecosystem partners, and specialty pharmacy or distributor data

  • Ensure data flows support real-time and near-real-time PSS operational needs

Data Stewardship & Quality

  • Defend the standards of existing infrastructure and actively assess and plan for the integration of new brand launches, data sources, or processes

  • Define and maintain the meaning, context, and intended use of all PSS data elements; own the data catalog and ensure full data lineage to support audits

  • Design, implement, and enforce data quality rules and validation standards across all PSS data sources — including 15+ core datasets and all incoming vendor feeds from SPs, hub platforms, payer systems, and other partners

Governance, Access & Compliance

  • Drive and safeguard infrastructure change management by implementing and auditing data, process, and infrastructure changes

  • Collaborate with US Data Privacy to define data classification standards (PHI, non-PHI, sensitive, restricted) across all PSS data domains; design and enforce data access policy and use models including consent management and data retention

  • Ensure the sufficiency of data and architectural safeguards to assure full HIPAA compliance and other regulatory frameworks in both policy and technical implementation for both structured and agentic AI modes of access

  • Evaluate data and business improvement opportunities with new data acquisitions and prevent data redundancy

About You

Required Qualifications

  • Bachelor's degree required; advanced degree in Information Management, Computer Science, Health Informatics, Data Science, or related field preferred

  • 7–10+ years of experience in data architecture, data governance, or data engineering; at least 3–5 years in healthcare, pharmaceutical, or patient services

  • Demonstrated experience with PHI (protected health information), patient privacy regulations, and healthcare data compliance

  • Proven track record designing and implementing data governance frameworks in complex, multi-platform environments

  • Experience in or closely with Patient Support Services, specialty pharmacy, or hub services strongly preferred

  • Senior leadership experience in matrixed, enterprise organizations

Technical Skills

  • Data Architecture & Modeling: Relational, data mesh and data lake architectures with command of common data modeling software

  • Platform Expertise: Snowflake, Salesforce Health Cloud or equivalent database & patient support platforms, SP data integration, enterprise data pipelines

  • Integration Patterns: API design, ETL/ELT pipelines, event streaming, controlled data sharing

  • Data Governance Tooling: Data catalog tools, metadata management, lineage tracking, data quality platforms

  • Access & Security: RBAC, ABAC, data masking, encryption standards

  • Analytics Enablement: BI dashboards, self-service analytics, AI/ML model inputs, automated workflow triggers

  • Compliance Frameworks: HIPAA, PHI handling, consent management, data retention standards

Business Acumen

  • Deep understanding of buy-and-bill product acquisition and the prescription pre/post-Rx journey: specialty drug

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Vacancy posted 14 hours ago
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