The Data Imperative: Why Data Sharing Matters to Your Organization

By Mona Siddiqui, Chief Data Officer, U.S. Department of Health and Human Services
Twitter: @HHSIDEALab

Data has become one of the single most valuable currencies underpinning the revenue models of innumerable companies and promising efficiencies with the potential to yield improved results across every sector. For organizations whose primary function is the sharing of data, the infrastructure needed to connect disparate sources may develop organically over time. For organizations focused on delivering services and managing programs, however, information pertinent to the effective management of a program may remain isolated within the program and shared only as needed. Moreover, given the focus on managing these day-to-day services, defining intended outcomes and linking across programmatic activities has likely not been an operational imperative.

To collect information and not use it to its fullest potential, however, is not just inefficient, it defies common sense.

To address these siloes of information at the US Department of Health and Human Services (HHS), the Data Initiative has been leading an effort to identify the challenges to data sharing within the Department. The report released represents a synthesis of these findings. For the first time in the Department’s history, a systematic examination of data sharing practices was undertaken across its agencies including CMS, FDA, CDC, NIH, AHRQ and others. The findings describe processes that lack transparency and reliability, a regulatory landscape that is difficult to navigate, technical barriers that prevent ease of information sharing, and resource constraints that inhibit data sharing from becoming a programmatic priority.

Why should you care?

Acknowledging the importance of making decisions that are grounded in evidence is not enough. We all have a stake in a government where policy decisions and determining resource allocations are based on the best available evidence. As a physician and a data scientist, I care deeply about ensuring that the data collected by the Department about the health of the nation is being used to deliver services in the most impactful way possible and designed to achieve success.

Releasing this report is an important first step. To be able to address the challenges outlined, all stakeholders must understand the current regulatory, technical and cultural considerations and that addressing these will require a long-term commitment. HHS is also not unique in these opportunities and sharing what we have learned is important in ensuring that we continue to learn from our partners and stakeholders and not duplicate efforts.

Understanding an organization’s data is about much more than data alone. It provides an unprecedented view into the ways in which an organization operates. I feel enormously privileged to have had the opportunity to speak with and learn from HHS leadership and staff committed to serving the American people every day. Their knowledge will be instrumental as we enter the next phase of our journey—developing a vision for what information sharing at HHS should be.

As we demand more from our healthcare systems, push them to deliver more value, transparency and evidence based care, HHS must also move in the same direction in the way it operates. Using the information we collect to make decisions is essential. Creating the foundation that allows this to happen is the most vital part of this journey.

This article was originally published on HHS Idea Lab and is republished here with permission.