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Partners in Highly-matrixed Organizations View Data Quality Differently — NIH CDO for All of Us Research Program

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Written by: CDO Magazine Bureau

Updated 1:56 PM UTC, Tue November 26, 2024

(US & Canada) Andrea Ramirez, Chief Data Officer for the All of Us Research Program at the National Institutes of Health (NIH), speaks with Adita Karkera, Chief Data Officer, Government and Public Services at Deloitte, in a video interview about her career journey, the role of the CDO in the broader picture, partnering with other C-suite leaders, and the approach to data quality, talent, and literacy.

Ramirez began her career as a physician-scientist with training in internal medicine and clinical pharmacology. She later joined the NIH, where she specialized in endocrinology, diabetes, and metabolism. Her work at the time focused on precision medicine, exploring how genes and environmental factors influence health outcomes.

As her expertise grew, Ramirez recognized the critical role of data in advancing precision medicine. Upon returning to Vanderbilt University as a faculty member, she contributed significantly to the All of Us Research Program, leading the data science team and helping establish the program’s initial data platforms as part of the Data and Research Center.

Eventually, she rejoined the NIH as a federal employee, where she now leads the strategy and vision for data coordination across the program. Her efforts have played a key role in establishing both the Data and the Analytics Offices at the NIH.

Shedding light on the role of the CDO at the Federal Coordinating Center, Ramirez says that it is integral to driving the organization’s strategy and operations. Initially, the All of Us program focused on establishing a proof of concept between 2016 and 2020, with the ambitious goal of recruiting a million participants, gathering their electronic health records, biospecimens, and survey data, and creating a cloud-based platform to provide researchers with access to this information. This phase demonstrated the feasibility of scaling data availability in the cloud, achieving rapid growth and validation.

As the program approached its fifth year, a strategic pivot was necessary to envision its direction over the next decade. A comprehensive goal-setting process identified the need to strengthen the Center’s data and analytics capabilities to shape its long-term strategy, foster partnerships, and expand ancillary studies.

Ramirez highlights that the CDO role operates within the Office of the CEO alongside the Chief Financial Officer and Chief Operating Officer. This position supports cross-divisional coordination, ensuring that the program not only facilitates external research through data sharing but also embeds data-driven decision-making into its internal operations. The role’s evolution stems from addressing emerging challenges and demonstrating how data can build, enhance, and sustain the program’s objectives.

When asked about a key initiative she has been working on, Ramirez mentions “driver projects,” designed to maximize the value of data once released and accessible in the cloud. The initiative emphasizes enabling external researchers, including those from academia, commercial organizations, and international institutions, to utilize this data for diverse applications.

While external partners play a key role in leveraging the data, Ramirez stresses the importance of the program itself engaging with its own data. This approach ensures the organization can critically evaluate and advocate for its data, informing strategic plans, scientific roadmaps, and funding decisions. By exploring research questions internally, these projects help refine future directions and identify new partnership opportunities, showcasing a balanced commitment to both external collaboration and internal insights.

Next, Ramirez speaks about the role of data quality, talent, and literacy in the broader mission. She explains that in a highly matrixed organization, achieving outcomes requires collaboration among numerous partners, each with a varying understanding of data quality. Whether it’s preparing data for operational or research purposes or returning it to participants, data quality plays a central role.

To address this, her team developed a data quality framework to guide partners and align expectations. This framework clarifies roles, responsibilities, and accountability, ensuring that all parties work toward consistent standards. Ramirez emphasizes that this approach ties closely to data governance and reflects significant leadership efforts to unify partners around delivering high-quality data.

Speaking about the data governance structure, Ramirez reveals that it is coordinated through a committee led by the Director of Data Governance. This committee, composed of federal staff overseeing program awards, is responsible for ensuring consistent funding and tracking of milestones across various initiatives. To enhance cohesion, federal employees overseeing the awards work on standardizing data governance practices across mechanisms.

Additionally, Ramirez highlights the development of specialized data-type working groups within the matrixed organization. These groups focus on aligning expertise across areas such as genomics, electronic health records, and survey data to achieve unified goals for managing the data portfolio. The aim is to present a consistent and cohesive managed data portfolio to external researchers, participants, and potential partners as the program and its platform continue to evolve.

CDO Magazine appreciates Andrea Ramirez for sharing her insights with our global community.

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