Job Description
Job Description
POSITION SUMMARY
The Lupus Foundation of America is seeking an Assistant Director, Data Governance and Analytics to lead and innovate our data initiatives. The Associate Director of Data Governance and Analytics will play a crucial role in overseeing the strategy, development, and implementation of data governance frameworks while leading analytics initiatives to drive business insights. This position requires a strategic thinker with hands-on experience in managing data quality, ensuring regulatory compliance, and leveraging advanced analytics techniques. The ideal candidate will collaborate closely with cross-functional teams to translate complex data into actionable insights, foster a culture of data stewardship, and maintain high standards of data integrity and security. They will maintain robust data infrastructure, ensuring data accuracy, integrity, and usability for various stakeholders. This individual will play a crucial role in leveraging data to improve patient outcomes and drive strategic decision-making within the organization.
PRIMARY RESPONSIBILITIES
Roles and responsibilities include, but are not limited to :
- Maintain and update the Research Accelerated by You registry database, including managing data entry procedures, quality checks, and system enhancements.
- Develop and enforce data management policies, data security protocols, and compliance with privacy regulations, such as HIPAA.
- Streamline workflows for data collection and validation for PULSE, Health Outcomes research, IMPACT and the RAY registry, troubleshoot technical issues, and implement best practices for data integrity with Qualtrics and Redcap databases housing all public health and research related data.
- Work with IT, clinical advisors, PULSE, Health Outcomes, IMPACT and RAY registry staff to ensure the system meets operational needs and supports research objectives.
- Create documentation for data handling processes and train staff on data procedures and software usage.
Position Title : Assistant Director, Data Governance and Analytics Supervisor / Manager : Vice President, Research
Employment Classification :
Full time – Salary Exempt Date : January 2025
Department & Location :
Research, National Office – Washington, DC Work Environment :
Hybrid : Employees split their time between remote work and working onsite at [location], with [specific expectations, e.g., 2-3 days a week in the office].Remote : Role is fully remote, requiring a home office setup with reliable internet connectivity.Extract, clean, and analyze RAY registry data and other survey data to identify trends, gaps, and opportunities. Generate reports and dashboards for stakeholders.Translate complex research and public health data into actionable insights, supporting research, operational improvements, and strategic decision-making.Conduct regular data audits and quality assessments, flagging inaccuracies or inconsistencies for correction across the LFA’s research and public health data platforms.Work closely with the Director of Research and subject matter experts to define analytical requirements, design surveys or studies, and evaluate outcomes for RAY and other research programs.Present RAY, public health and other research data findings in clear, understandable formats to support patient care improvements, research initiatives, and regulatory reporting.POSITION REQUIREMENTS
The Assistant Director, Data Governance and Analytics must be a team player, effectively juggling a variety of projects across organizational departments with grace and professionalism. This position requires a strategic and forward-thinking individual who is detail-oriented, an excellent communicator, and a strong project manager, with demonstrated experience in developing and executing comprehensive data governance and analytics strategies with expertise in managing platform transitions to accommodate the ever-changing technology landscape.
Minimum of five (5) years of experience in data management, statistical analysis and modeling which includes hypothesis testing, logistic and linear regression, parametric and non-parametric methodsA minimum of three (3) years of experience using SPSS, SAS or R programming language (Python is a plus)Proficiency in both statistical modeling and machine learning algorithms, model tuning, and validation of developed algorithmsThree (3) or more years of experience in patient self-reported data analytics.Proven ability to identify, analyze, and solve complex data problems.Strong project management skills, with the ability to coordinate multiple data initiatives simultaneously.Experience working with large-scale, complex data sets such as Electronic Health Record data, or research cohort data in the clinical domainFamiliarity with healthcare data standards for exchanging health information between computer systems (e.g., HL7 (Health Level Seven) and FHIR (Fast Healthcare Interoperability Resources)) and patient registry systems.Understanding of data privacy and security regulations, including HIPAA compliance.Strong computer skills and ability to use necessary databases and softwareExpertise in crafting statistical analysis plansExceptional written and verbal communication skills, with the ability to present findings effectively to stakeholders, including translating high science to the general public.Proven track record in engaging diverse teams and securing buy-in for data initiatives, while ensuring alignment with organizational goals.Passion for staying current with emerging technologies and trends in data management and analytics.A growth mindset, with a willingness to continuously learn, develop, and share knowledge within the organization.Strong organizational skills, effective time management, responsibility, and self-motivationLess than 10% travel availabilityPreferred Qualifications :
Lupus Data Analysis expertiseEfficient and effective integration of AI into workflowsExperience with Human Subject Research and IRB processesPrevious experience in a healthcare or research environmentExtensive experience in publishing research findings in high-impact journalsExperience with data visualization tools (e.g., Tableau, Power BI, ggplot) to present complex data in an accessible manner.The ideal candidate will bring strategic vision, meticulous attention to detail, and a passion for leveraging data to support the organization’s mission, ensuring robust governance and insightful analytics that drive impactful outcomes.
EDUCTATION
A Master's or PhD degree in biostatistics, data science, biomedical informatics, epidemiology, publichealth, computer science, applied mathematics, engineering, or a related field
WORKING AT LFA
At the Lupus Foundation of America, every role contributes to solving the mystery of lupus—one of the world’s most cruel and unpredictable diseases—and improving the quality of life for those affected by its devastating impact. Our mission drives everything we do, and our employees are proud to be part of an organization dedicated to making a tangible difference.
Working at LFA offers :
Mission-Driven Purpose : Be part of a team deeply committed to finding a cure for lupus and supporting those living with the disease, making your work meaningful and impactful.Patient-Centric Focus : Join an organization where the needs and experiences of lupus patients are at the heart of every initiative.Supportive and Diverse Environment : Thrive in a collaborative workplace that values diversity and fosters a culture of mutual support and shared goals.Comprehensive Benefits : Enjoy 100% employer-covered individual medical, dental, and vision insurance, along with additional benefits to support your well-being.Meaningful Contributions : Make a direct impact on the lives of people with lupus through innovative programs, events, and advocacy.JOIN US If you’re a dynamic, mission-driven individual passionate about driving positive change and improving lives, we encourage you to apply! At LFA, your contributions will help solve the mystery of lupus and create a world where people with lupus can live healthier, fuller lives while making a lasting difference.
