Director, PSS Rare Disease Data Strategy, Architecture and Governance

Sanofi•Cambridge, MA

1d•$178,500 - $257,833•Hybrid

About The Position

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.

Requirements

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
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
Deep understanding of buy-and-bill product acquisition and the prescription pre/post-Rx journey: specialty drug access, prior authorization, utilization management, denial/appeal workflows, triage to fill, SP fulfillment, and adherence monitoring
Some understanding of the patient services journey within rare disease management
Ability to communicate complex data concepts to non-technical stakeholders and senior leadership and influence outcomes
Strong prioritization skills balancing business, IT, compliance, and external partner demands

Responsibilities

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
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
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
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