AD, Data Partnerships - Rare Disease
Novartis
September 02, 2026
Remote
United States
IT
Key Responsibilities:
- Implement the rare disease data partnership strategy, identifying 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 providers, platforms, and vendors.
- Use deep knowledge of rare disease data sources, vendor capabilities, limitations, patient-identification challenges, and fit-for-purpose use cases to guide partnership decisions.
- Monitor adherence to data quality, security, privacy, and compliance standards for external rare disease data.
- Collaborate with vendors and internal stakeholders (analytics, field enablement, access, patient services, cross-functional rare disease teams) to resolve data quality issues.
- Ensure oversight of partnerships via data standards, data-sharing agreements, governance expectations, and internal policies.
- Implement data stewardship practices across platforms, vendors, and technology solutions throughout the partnership lifecycle.
- Track partnerships and spend; provide performance metrics and governance reporting; identify opportunities for operational efficiency and improved governance.
- Advise stakeholders on data availability, interpretation, limitations, and appropriate use of rare disease data.
Essential Requirements:
- Bachelor’s or Master’s degree in Information Management, Computer Science, Business Administration, or related field.
- Minimum 6 years establishing and managing data partnerships in rare disease/healthcare data/data governance/data management or related roles.
- Strong understanding of rare disease data assets (sourcing, patient identification, coverage, refresh cadence, linkage, quality, use cases).
- Expert knowledge of data partnership principles/frameworks/best practices.
- Familiarity with healthcare data privacy/security/quality/compliance regulatory requirements and industry standards.
- Strong leadership, communication, stakeholder management, influencing, and change management.
- Strong analytical/problem-solving skills; ability to assess vendor data quality and manage partnership risks.
Highly Desirable:
- Prior experience working with or for data vendors/providers/healthcare platforms/analytics organizations.
- Experience with IQVIA, Komodo, MMIT, Symphony, Definitive Healthcare, Veeva, claims/EHR, patient services, specialty pharmacy, or similar.
Compensation & Benefits (if applicable):
- Salary range: $145,600–$270,400 per year; performance-based cash incentive; possible annual equity awards; US benefits including health, life/disability, 401(k), and time off.
Application instructions: Not provided in the text.
- Implement the rare disease data partnership strategy, identifying 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 providers, platforms, and vendors.
- Use deep knowledge of rare disease data sources, vendor capabilities, limitations, patient-identification challenges, and fit-for-purpose use cases to guide partnership decisions.
- Monitor adherence to data quality, security, privacy, and compliance standards for external rare disease data.
- Collaborate with vendors and internal stakeholders (analytics, field enablement, access, patient services, cross-functional rare disease teams) to resolve data quality issues.
- Ensure oversight of partnerships via data standards, data-sharing agreements, governance expectations, and internal policies.
- Implement data stewardship practices across platforms, vendors, and technology solutions throughout the partnership lifecycle.
- Track partnerships and spend; provide performance metrics and governance reporting; identify opportunities for operational efficiency and improved governance.
- Advise stakeholders on data availability, interpretation, limitations, and appropriate use of rare disease data.
Essential Requirements:
- Bachelor’s or Master’s degree in Information Management, Computer Science, Business Administration, or related field.
- Minimum 6 years establishing and managing data partnerships in rare disease/healthcare data/data governance/data management or related roles.
- Strong understanding of rare disease data assets (sourcing, patient identification, coverage, refresh cadence, linkage, quality, use cases).
- Expert knowledge of data partnership principles/frameworks/best practices.
- Familiarity with healthcare data privacy/security/quality/compliance regulatory requirements and industry standards.
- Strong leadership, communication, stakeholder management, influencing, and change management.
- Strong analytical/problem-solving skills; ability to assess vendor data quality and manage partnership risks.
Highly Desirable:
- Prior experience working with or for data vendors/providers/healthcare platforms/analytics organizations.
- Experience with IQVIA, Komodo, MMIT, Symphony, Definitive Healthcare, Veeva, claims/EHR, patient services, specialty pharmacy, or similar.
Compensation & Benefits (if applicable):
- Salary range: $145,600–$270,400 per year; performance-based cash incentive; possible annual equity awards; US benefits including health, life/disability, 401(k), and time off.
Application instructions: Not provided in the text.