AD, Data Partnerships - Rare Disease

About this role

Job Description Summary #LI-Remote This position can be based remotely anywhere in the U.S. (there may be some restrictions based on legal entity). Please note that this role would not provide relocation as a result. The expectation of working hours and travel (domestic and/or international) will be defined by the hiring manager. This position will require 20% travel.

Job description summary The Data Innovation, Partnerships and Products team, under the Data Products and Foundations pillar within Strategy, Platforms and Transformation, enables improved decision-making at Novar-tis by leveraging data and advanced analytics capabilities to generate actionable insights that drive business growth. The Associate Director, Data Partnerships - Rare Disease will play a critical role in establishing, managing, and strengthening rare disease-focused data partnerships that support the US Commercial organization and advance priority business needs across rare dis-ease brands, customer engagement, patient access, patient finding, and field execution.

This role is responsible for overseeing Novartis’ strategic rare disease data partnerships within SPT to ensure compliance, quality, business relevance, and effective use of external data assets. The Associate Director will bring depth in healthcare and rare disease data, including experience working with or for a data vendor, and will help implement the data partnership strategy, monitor spend and partnership performance, enforce data stewardship practices, and partner with internal teams to identify the most relevant rare disease data sets to support business needs and data-driven decision-making.   Job Description Key Responsibilities: • Implement the organization’s rare disease data partnership strategy, including the identification of critical data needs across US Commercial rare disease brands, functions, and priority use cases. • Establish, manage, and strengthen strategic rare disease data partnerships with external data providers, platforms, and vendors to maximize the value of external rare disease data assets. • Apply deep understanding of rare disease data sources, vendor capabilities, data limitations, patient identification challenges, and fit-for-purpose use cases to guide partnership decisions and business recommendations. • Monitor adherence to data quality, security, privacy, and compliance standards for external rare disease data sources, platforms, and vendors, ensuring alignment with regulatory requirements and internal data management policies. • Collaborate with data vendors, business stakeholders, analytics teams, field enablement, access, patient services, and cross-functional rare disease teams to address data quality issues and communicate corresponding changes. • Implement oversight mechanisms for external rare disease data partnerships, ensuring compliance with data standards, data-sharing agreements, governance expectations, and internal policies. • Implement data stewardship practices across platforms, vendors, and technology solutions to verify that rare disease data is properly managed, governed, and leveraged throughout the partnership lifecycle. • Track rare disease data partnerships and spend, provide performance metrics and governance reporting to senior leadership, and identify opportunities for operational efficiencies, improved governance, and enhanced collaboration. • Work closely with internal stakeholders to understand rare disease business needs, recommend relevant data sets, and guide teams on how to extract actionable insights from available data sources. • Provide ongoing data advisory support to internal stakeholders, including guidance on recurring deliverables, interpretation of data outputs, data availability, limitations, and appropriate use of rare disease data to support business decisions.

Experience: Novartis seeks an individual with extensive experience establishing and managing rare disease data partnerships. The ideal candidate will have a deep understanding of healthcare and rare disease data, including the strengths, limitations, governance considerations, and business applications of external data assets. Prior experience working with or for a data vendor is strongly preferred, as this role requires the ability to assess vendor capabilities, challenge data assumptions, manage partnership performance, and translate rare disease business needs into practical data solutions. A proven ability to navigate data-related risks, including privacy, security, quality, compliance, and small patient population considerations, while building mutually beneficial vendor partnerships is essential. The successful candidate will be committed to continuous improvement in the organization’s rare disease data partnership strategy, leveraging data insights, vendor expertise, and industry trends to strengthen collaboration and maximize the value of external data assets.

Essential Requirements: • Education: Bachelor’s or Master’s degree in Information Management, Computer Science, Business Administration, or related field. • Minimum 6 years of experience establishing and managing data partnerships, with a strong focus on rare disease, healthcare data, data governance, data management, or related roles. • Prior experience working with or for a data vendor, data provider, healthcare data platform, or analytics organization is strongly preferred. • Deep understanding of rare disease data assets, including data sourcing, patient identification, data coverage, refresh cadence, linkage, quality considerations, and fit-for-purpose business use cases. • Expert understanding of data partnership principles, frameworks, and best practices, with a proven ability to forge strategic collaborations with external data providers and vendors. • Familiarity with regulatory requirements and industry standards related to healthcare data privacy, security, quality, compliance, and appropriate use of rare disease data. • Excellent leade

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