HHS Proposes Treating Health Data as a ‘Public Utility’

The question of who owns health data – and how it should be used – is gaining momentum as a central issue in modern healthcare. A recent policy forum, building on work initiated by the Department of Health and Human Services (HHS), has reignited the debate around treating health data as a “public utility,” a concept that could fundamentally reshape how research is conducted and how patients benefit from the increasing digitization of medical records. This idea stems from the recognition that, in a world saturated with digital health information, patient interactions with the healthcare system represent a valuable resource, akin to a natural resource like electricity or water.

Historically, health and biomedical data were largely generated through meticulously designed clinical trials. However, the rise of electronic health records, wearable devices, and telehealth has created a wealth of “real-world data” – information gathered outside of traditional research settings. The Living HHS Open Data Plan, published last July, proposes a shift in perspective, advocating for easier access to and leveraging of this data for research, safety monitoring, and public health initiatives. Katie Palmer, a health tech correspondent at STAT, reports on these developments, emphasizing the impact on patients, providers, and businesses. You can reach Katie on Signal at palmer.01.

The Infrastructure of a Health Data Utility

The concept of a health data “public utility” isn’t simply about making data freely available. The researchers and former agency officials who contributed to the policy forum published in Science argue that a robust governance structure is essential. They draw parallels to other established utilities, suggesting a system involving customers (patients), local distribution companies (healthcare providers), transmission companies (data intermediaries), generators (research institutions), and government oversight. This framework aims to balance the need for data access with the protection of patient privacy and data security.

This analogy to traditional utilities is crucial. Just as electricity requires a complex network of infrastructure to deliver power to homes and businesses, health data requires a secure and interoperable system to facilitate its use for the public excellent. Interoperability – the ability of different systems to exchange and use data – remains a significant challenge in healthcare. Without standardized data formats and secure data exchange protocols, the potential of a health data utility cannot be fully realized.

Who Stands to Benefit?

The potential beneficiaries of a health data utility are numerous. Patients could gain access to their own data, empowering them to make more informed decisions about their health. Researchers could accelerate the pace of discovery, identifying new treatments and preventative measures more efficiently. Public health agencies could improve their ability to monitor disease outbreaks and respond to public health emergencies. Pharmaceutical companies, whereas potentially benefiting from access to larger datasets, would also face increased scrutiny regarding data usage and transparency.

However, the benefits are not without potential risks. Concerns about data privacy, security breaches, and the potential for discriminatory practices remain paramount. The HHS Employee Directory (accessed March 5, 2026) highlights the agency’s commitment to responsible data management, but ongoing vigilance and robust regulatory frameworks are essential to mitigate these risks.

Navigating the Complexities of Real-World Data

Real-world data differs significantly from the data generated in clinical trials. Clinical trials are carefully controlled, with specific inclusion and exclusion criteria, standardized data collection methods, and rigorous statistical analysis. Real-world data, is often messy, incomplete, and subject to biases. Factors such as socioeconomic status, geographic location, and access to healthcare can all influence the data, potentially leading to inaccurate or misleading conclusions.

For example, data collected from wearable devices may be more representative of individuals who are already health-conscious and engaged in their own care. This could introduce a selection bias, limiting the generalizability of findings. Similarly, data from electronic health records may be more complete for patients who have regular access to healthcare, potentially underrepresenting the experiences of underserved populations.

The Role of Governance and Regulation

Establishing a clear governance structure is critical to address these challenges. This structure should include mechanisms for data standardization, quality control, and security. It should also address issues of data ownership, access, and use. The HHS Open Data Plan represents a step in the right direction, but further policy development and regulatory guidance are needed to fully realize the potential of a health data utility.

One key consideration is the development of data use agreements that protect patient privacy while allowing for responsible data sharing. These agreements should specify the purposes for which the data can be used, the safeguards that will be in place to protect patient confidentiality, and the consequences of violating the agreement. Independent oversight bodies may be needed to ensure that data is used ethically and responsibly.

Looking Ahead: Towards a More Data-Driven Healthcare System

The conversation around health data as a public utility is still in its early stages. However, the growing recognition of the value of real-world data, coupled with advancements in data analytics and artificial intelligence, suggests that this concept will continue to gain traction. The next steps will likely involve further policy development, regulatory guidance, and investment in data infrastructure.

Katie Palmer’s reporting at STAT, as well as her LinkedIn profile (viewable with a LinkedIn account), provides ongoing coverage of these developments. Continued dialogue between stakeholders – patients, providers, researchers, policymakers, and industry representatives – will be essential to ensure that a health data utility is developed in a way that benefits all members of society. The ultimate goal is to create a more data-driven healthcare system that is more efficient, effective, and equitable.