AcademyHealth has long championed efforts to ensure researchers have access to high-quality data, including our participation in a legal settlement last year that restored federal public health data and webpages removed in 2025 from NIH, CDC, and FDA websites. Since 2017, we have managed one of the Robert Wood Johnson Foundation’s signature research programs, Health Data for Action (HD4A), which sought to make access to data available to researchers to answer critical research questions and inform health policy. After nearly 10 years, the HD4A program will conclude at the end of 2026. We are continuing to work with our final cohort of 23 grantees to offer technical assistance and training and to help bring visibility to their work, and throughout the year we will be sharing more about what we have learned from HD4A, the data sources used, and what’s on the horizon in the field of health data and data analysis.
This blog, the first in a three-part series, highlights two prominent learnings from our HD4A grantees and program: the power and potential for representative and transparent data. We conclude with an eye toward the future, highlighting opportunities and challenges ahead.
Advancing Equity Through Representative and Nuanced Data
Ensuring access to data involves more than just making information accessible to researchers and the public. It also involves a commitment to collecting high-quality, robust data that accurately represents all individuals and communities, including marginalized and underrepresented groups. The phrase "if you are not counted, you don’t count" further underscores the importance of inclusive data collection practices.
One critical area where data collection has been historically insufficient is in relation to sexual orientation and gender identity (SOGI), and this issue is being further undermined by the current administration. The lack of data in this area severely limits our ability to understand the disparities and inequalities faced by the LGBTQ+ population. Issues such as health care access, chronic health and mental health disparities, and rates of violence and discrimination against LGBTQ+ individuals are often overlooked when data fails to capture their experiences accurately.
A current HD4A grantee, Dr. Carl Streed Jr., Associate Professor, Brown University is exploring what’s possible with access to more representative SOGI data, including the ability to develop tailored interventions and policies to improve health outcomes and equity for sexual and gender minority individuals. He suggests that policymakers, researchers, and public health officials need to prioritize these efforts and work collaboratively with LGBTQ+ communities to ensure their needs, challenges, and risk profiles are accurately captured in health records to better address the needs of this population.
Facilitating Consumer Choices Through Price Transparency Initiatives
The past few years, the Centers for Medicare and Medicaid Services (CMS) have taken significant measures by implementing two price transparency rules designed to support patients and consumers. The first, the Hospital Price Transparency (HPT) rule, mandates that hospitals disclose the prices, including negotiated rates, discounted-cash prices, and gross charges for all hospital items and services. The second, the Transparency in Coverage (TiC) rule, requires health insurers to publicly disclose in-network and out-of-network rates for all covered items and services.
Four current HD4A grantees - Dr. Laurence Baker, Professor, Stanford University, Dr. Christopher Whaley, Associate Professor, Brown University, Christopher Behrer, Doctoral Candidate, Duke University, and Dr. Lauryn S. Walker, Chief Strategy Officer, Virginia Center for Health Innovation, are examining the TiC data to understand prices, contracts, true health care costs, and affordability. And while this work is critically important, price transparency alone is not sufficient to fully empower patients and consumers in their health-related decision-making; however, it serves as a critical foundational step. In a recent advancement under the TiC rule, HHS announced a significant regulatory breakthrough that will provide health care providers and their patients real-time access to prescription drug pricing information starting October 1. Complementing these federal initiatives, various state drug transparency laws have emerged that require pharmaceutical companies to report and justify the factors contributing to the cost, development, and sale of drugs to state or state-affiliated entities. These laws aim to hold manufacturers accountable for their pricing strategies.
This development, along with state-level transparency efforts, will enable Americans to compare drug prices, understand out-of-pocket costs, and access any prior authorization requirements associated with medications. The anticipated outcome of these actions is a health care system where patients and consumers are better equipped to make health decisions, while providers can focus on choices that prioritize patient needs. By integrating federal and state efforts, the landscape of drug pricing is poised to become more transparent and patient friendly.
Data Access and Transparency: The Opportunities and Challenges Ahead
As we prepare for the conclusion of the HD4A program, it is clear there is more work to do to ensure researchers have access to data that would otherwise be out of reach, and to ensure patients and consumers realize the true benefits of data transparency. In the two upcoming blog posts in this series, AcademyHealth President and CEO Aaron Carroll will explore why data access determines what questions can be answered and how partnerships with health systems, payers, and states bridge that gap. AcademyHealth Chief Programs and Science Officer Elizabeth Cope will focus on the illusion of choice and why data transparency alone is not enough to empower consumers and offer some policy solutions for addressing accessibility and agency.