Department

BSD PED - Hematology, Oncology, and Stem Cell Transplantation - Pediatric Cancer Data Commons: Operations

About the Department

The Biological Sciences Division’s ‘Data for the Common Good’ (D4CG), is a rapidly-growing team of experts in medicine, clinical research, public health, data standards, data infrastructure and programming, data governance and international data sharing. Headquartered in the Department of Pediatrics at the University of Chicago, D4CG works to connect and share disparate data sets in order to alter long-standing research paradigms and enable the study of new research questions that drive cures. Its signature flagship project, the Pediatric Cancer Data Commons (PCDC), houses the world’s largest set of clinical data for pediatric cancer, uniting clinical data from across five continents for almost all types of pediatric cancer. Leveraging its expertise in establishing data commons, D4CG has expanded to create similar infrastructure across other rare diseases, including rare forms of diabetes, pediatric epilepsy, Crohn’s and ulcerative colitis, traumatic brain injury, and adult cancers, as well as a university-wide initiative called the Sociome, a scalable and extensible infrastructure and architecture that will ultimately assemble, quantify and organize the entirety of social context experienced by every individual. Across this work, there is increasing interest in adding electronic health record data directly from patients, expanding the versatility, extensibility and power of these data collections.

Job Summary

The Program Director for Direct-from-Patient Contributed Health Data will coordinate the development, integration, and management of technology platforms that enable the collection, storage, and analysis of health data directly from patients. This role requires substantial prior experience with data systems, understanding of healthcare data privacy regulations, and a focus on ensuring that patient-contributed data is securely and effectively utilized to drive research and ultimately improved healthcare outcomes The ideal candidate will assemble cross-functional teams, liaise with stakeholders, and ensure seamless integration of patient data into larger health data ecosystems.

This at-will position is wholly funded by contractual grant funding which is renewed under provisions set by the grantor of the contract. Employment will be contingent upon the continued receipt of these grant funds and satisfactory job performance.

Responsibilities

Program Leadership & Strategy 

Work alongside subject matter experts and other key leaders to define the vision, strategy, and roadmap for direct-from-patient data collection initiatives. 

Assemble and guide multi-disciplinary teams to develop and deliver technical solutions for patient-contributed data platforms. 

Collaborate with key internal and external stakeholders to align project goals with organizational objectives, research needs, and regulatory requirements. 

Oversee program timelines, deliverables, and budgets, ensuring high-quality execution within set constraints. 

Technical Oversight 

Coordinate with technical staff on the design, development, and implementation of data collection and integration platforms. 

Work closely with technical, data standards, and data operations teams to ensure technical specifications meet project needs. 

Advise on systems’ adherence to healthcare industry standards for data privacy and security, including HIPAA, GDPR, and other relevant regulations. 

Remain current on emerging technologies and tools for improving patient data collection methods, such as wearables, mobile apps, and remote monitoring devices. 

Data Privacy, Compliance & Security 

Ensure the project adheres to the principles of integrity, confidentiality, and security of patient-contributed data. 

Coordinate with technical, governance, legal, and information security personnel to ensure compliance with health data regulations and best practices. 

Stakeholder Management & Collaboration 

Serve as the primary point of contact for both internal and external stakeholders, including researchers, technology vendors, and regulatory bodies. 

Facilitate collaboration between technical, data standards, data operations, and regulatory teams to ensure the successful delivery of patient data collection programs. 

Engage with patients and advocacy groups to understand their concerns, improve the user experience, and ensure that the program aligns with patient-centered values. 

Program Monitoring & Continuous Improvement 

Monitor and assess program performance through KPIs, metrics, and feedback loops. 

Drive continuous improvement by identifying areas for optimization, leveraging patient feedback, and implementing new technologies or processes as necessary. 

Stay abreast of industry trends, emerging technologies, and best practices in patient data collection and health data management. 

Other 

Plans and develops program objectives and/or content. Researches and identifies trends and needs and establishes program directions accordingly. 

Develops and administers program budgets and recommends or makes budgetary recommendations.  

Serves as a key resource for program information. Resolves problems or questions referred by program staff, University administrators, or other contingencies. 

Performs other related work as needed. 

Minimum Qualifications

Education:

Minimum requirements include a college or university degree in related field.

Work Experience:

Minimum requirements include knowledge and skills developed through 7+ years of work experience in a related job discipline.

Certifications:

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Preferred Qualifications 

 

Education: 

Master's degree 

 

Experience: 

7+ years of experience in technical program management, with at least 3 years in healthcare, health tech, or related fields. 

Proven track record of overseeing complex technical projects, particularly in data systems or health informatics. 

Fundamental understanding of data privacy regulations, including HIPAA, GDPR, and relevant local and international health data standards. 

Experience leading cross-functional teams, managing stakeholders, and delivering large-scale technical solutions. 

Experience with patient-facing technologies (e.g., mobile apps, wearable devices, patient portals) and health data interoperability standards (e.g., FHIR, HL7). 

Familiarity with cloud technologies, big data, and machine learning in the context of healthcare data. 

Strong communication skills, with the ability to articulate complex technical solutions to non-technical stakeholders. 

Demonstrated ability to manage multiple projects in a fast-paced, dynamic environment. 

 

Preferred Competencies  

Demonstrated success in managing the operation of complex software development projects with a broad set of stakeholders.  

Demonstrated interest in developing programs. 

Interest in digital tools and methods for research. 

Demonstrated record of success in developing and maintaining strong working relationships with faculty, staff, administrators, and other internal and external partners.  

Knowledge of project management concepts, tools, software, and best practices. 

Ability to work independently, as well as collaboratively, in a changing environment. 

Understanding of the types of publicly available datasets that comprise the SDC as well as clinical trial, registry and other clinical data, electronic health record data that will be combined with the SDC for research purposes. 

Understanding of non-clinical data that correlate with health outcomes (e.g., environmental factors). 

Knowledge of medical research and clinical data.  

Strong and effective oral and written communication skills. 

Ability to facilitate group decision-making processes and foster an environment of healthy team idea exchange and collaboration. 

Ability to communicate effectively with stakeholders from various cultures, countries, and knowledge bases. 

Ability to accurately monitor project progress, to keep track of effort and funds expended and committed, and to anticipate at an early stage any need for changes in project direction, scope, objectives, funding, or timeline. 

Ability to prioritize multiple projects and independently follow through with detail on general, and sometimes ambiguous, instructions for projects. 

Ability to facilitate technical discussions, as well as the ability to synthesize, summarize, and generate insight from large amounts of complex information. 

Excellent communication, time management / organization, troubleshooting, and analytical skills. 

 

Application Documents  

Resume (required) 

Cover Letter (required) 

When applying, the document(s) MUST be uploaded via the My Experience page, in the section titled Application Documents of the application.

Job Family

Administration & Management

Role Impact

Individual Contributor

Scheduled Weekly Hours

40

Drug Test Required
 

No

Health Screen Required
 

No

Motor Vehicle Record Inquiry Required
 

No

Pay Rate Type

Salary

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FLSA Status

Exempt

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Pay Range

$110,000.00 - $160,000.00

The included pay rate or range represents the University’s good faith estimate of the possible compensation offer for this role at the time of posting.

Benefits Eligible

Yes

The University of Chicago offers a wide range of benefits programs and resources for eligible employees, including health, retirement, and paid time off. Information about the benefit offerings can be found in the Benefits Guidebook.

Posting Statement
 

The University of Chicago is an Affirmative Action/Equal Opportunity/Disabled/Veterans and does not discriminate on the basis of race, color, religion, sex, sexual orientation, gender, gender identity, national or ethnic origin, age, status as an individual with a disability, military or veteran status, genetic information, or other protected classes under the law. For additional information please see the University's Notice of Nondiscrimination.

 

Staff Job seekers in need of a reasonable accommodation to complete the application process should call 773-702-5800 or submit a request via Applicant Inquiry Form.

 

We seek a diverse pool of applicants who wish to join an academic community that places the highest value on rigorous inquiry and encourages a diversity of perspectives, experiences, groups of individuals, and ideas to inform and stimulate intellectual challenge, engagement, and exchange.

 

All offers of employment are contingent upon a background check that includes a review of conviction history.  A conviction does not automatically preclude University employment.  Rather, the University considers conviction information on a case-by-case basis and assesses the nature of the offense, the circumstances surrounding it, the proximity in time of the conviction, and its relevance to the position.

 

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