AD, Data Partnerships - Rare Disease

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.

• 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.

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.

• Education:
  
  Bachelor’s or Master’s degree in Information Management, Computer Science, Business…