President Joe Biden’s executive order on Advancing Racial Equity and Support for Underserved Communities Through the Federal Government aims to improve health for underserved communities by building the capacity of agencies to work toward health disparity gaps. It’s a big and necessary challenge, and one that has many impacts to technology.
While the vision is clear, government agencies have faced challenges modernizing its health IT infrastructure to create an equitable, effective and interoperable health care model. During GovCIO Media & Research’s Health Tech Equity working group meeting, federal leaders in various agencies discussed barriers to reach this goal, solutions to overcome them and actions to take the next steps in this journey.
Notable points from the Jan. 19 meeting include developing policy to improve cross-government data sharing, building trust with the public, exploring bias and creating health equity frameworks.
Developing Policy for Cross-Government Data Sharing
Among the opportunities for innovation in the health care landscape, privacy issues remain a concern. Regulations that are designed to protect the privacy of patient data and their personal health information can impact data sharing efforts.
The current Federal Data Strategy Action Plan calls for accelerating practices that “increase the sharing and use of data for federal decision-making and operational needs,” but legal issues, capacity constraints and fragmented data systems across government can present significant challenges to sharing data.
Federal leaders are focusing on culture and clear framework development that benefits data sharing and building capacity and an interoperable data infrastructure to combat these challenges.
Some federal leaders say taking a top-down approach to data sharing can be necessary amid the sheer amount of data generated by each agency, coupled with differing systems. One possibility to address this is to develop a shared data system used across federal government.
Additionally, federal leaders are exploring how changes to the federal contracting process and new funding models could help bring improved, streamlined tech faster. Innovative funding models like modular contracting could provide the necessary environment to bring in more of that new tech.
First launched in April 2018, the Technology Modernization Fund (TMF) is a product of the 2017 Modernizing Government Technology Act that allocates funding and manpower to federal IT projects with the intent of fostering their ongoing success. It serves as an example of one way government agencies are trying to fund and implement modernization faster.
The TMF is one of the tools in the federal toolbox that is helping agencies modernize data management practices. The TMF is leveraging agile frameworks to test services on a small scale, gain lessons learned, then implement best practices on a larger model. This iterative approach enables agencies to anticipate and learn from failures.
Building Trust in Government
As agencies modernize the federal health IT infrastructure, leaders expressed challenges in building public trust. Taking a customer-centered approach is one way to overcome these barriers.
According to the Pew Research Center, public trust in government remains low, which has been the case for much of the 21st century, with only 2 in 10 Americans saying they trust the government to “do what is right.”
There are also barriers for government when it comes to the digital divide and providing equitable services to citizens with varying degrees of access to technology, whether that be personal devices like laptops or internet services. Agencies also face challenges with digital literacy.
Human-centered design could help agencies improve public trust in government. Human-centered design is focused on solving problems as opposed to implementing solutions.
Working group members highlighted that a more adaptive and flexible product management approach allows developers to respond to human feedback and user testing to align functionality more closely with human need, ultimately improve trust in products and the agencies offering those products.
The TMF is leveraging agile frameworks to test services on a small scale, gain lessons learned, then implement best practices on a larger model. This iterative approach enables agencies to anticipate and learn from failures then pivot as changes arise to deliver successful outcomes.
Having an effective way of collecting customer feedback and needs plays an integral part of successful human-centered design. Some of the ways agencies are collecting this information is through surveys, listening sessions or open forums. This information could also help inform policy.
Additionally, it’s important for technologists and leadership alike to study and apply the principles of diversity, equity, inclusion and access (DEI&A) to mitigate inequitable or unintendedly biased services. These principles must come from the top down to build a culture of DEI&A.
Exploring Bias and Creating Health Equity Frameworks
Risk management is critical as government agencies develop and integrate technology into health care. While technologies like artificial intelligence (AI) and digital services could benefit the patient experience, they also come with their own set of challenges. Federal leaders must weigh both the benefits and risks of new technologies to ensure they’re trustworthy, accessible and equitable.
Harvard University defines algorithmic bias in technology as an algorithm that compounds existing inequities in socioeconomic status, race, ethnic background, religion, gender, disability or sexual orientation and amplifies inequities in health systems. Biased algorithms in health technology could not only reflect social inequities, but also exacerbate them.
Federal agencies have started developing guidance to create standards and governance around AI development — including the White House.
The Office of Management and Budget (OMB) is working on a draft policy guiding the use of AI by the government. This follows other efforts from the White House including the release of an AI Bill of Rights and a new strategy to develop standards for critical and emerging technology.
At the beginning of the year, the National Institute of Standards and Technology (NIST) released an AI Risk Management Framework to better manage risks to individuals, organizations and society associated with AI. The voluntary framework aims to improve the ability to incorporate trustworthiness considerations into the design, development, use and evaluation of AI products, services and systems.
Analytics are an important part of understanding the current landscape, developing a plan and tracking progress, but sometimes data gathering itself can become a hurdle.
Some agencies struggle to develop policies or programming that supports sexual gender minority groups due to a lack of data and a lack of trust.
While agencies modernize legacy architecture and work to enable better data-driven decision making, they also need to modernize legacy practices. It takes a change and innovation-ready mindset to build systems that advance health equity.
As a first step, agencies aim to correct legacy data collection practices that don’t follow best practices and could skew analytics. Current initiatives include expanding self-identification in health care settings to include more options for race and gender.
Improving access to health information and data literacy is also key to creating an equitable health IT framework. Agencies are developing data-driven health equity efforts and making changes in their external and internal programming to promote equity across the health ecosystem.
One program at the Department of Health and Human Services (HHS), Healthy People 2030, sets data-driven national objectives to improve health and well-being over the next decade. Its goal is to “eliminate health disparities, achieve health equity, and attain health literacy to improve the health and well-being of all.”
To be successful, the program is leveraging data to track health disparities and inform program and policy development, focusing on health literacy and social determinants of health to achieve health equity.
GSA is another agency working to improve accessibility. The agency’s U.S. Web Design System (USWDS) provides a library of design guidelines and code to help government developers and designers quickly create trustworthy, accessible and consistent digital government services. The open-source, free set of tools helps government provide consistent, easy-to-use and accessible websites, while complying with Section 508 and White House guidance.