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HHS Data Strategy: The Vital Role of Consent Management in Bridging Health & Human Services Data

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health data_HHS data strategyThe latest HHS Data Strategy was unveiled back in December, and it's packed with updates that provide valuable insight into their priorities and where they're putting their attention.

One of the key insights is their recognition of the evolving needs and opportunities since the last strategy in 2018, especially considering the COVID-19 pandemic. It's like they're saying, "Here's what's changed, and here's how we're adapting."

The HHS Data Strategy is essentially a roadmap for where they're directing their efforts to ensure data is utilized effectively. Now, let's talk priorities. They've outlined five key areas:

    1. Cultivating Data Talent
    2. Fostering Data Sharing
    3. Integrating Administrative Data into Program Operations
    4. Enabling Whole-Person Care Delivery by Connecting Human Services Data
    5. Responsibly Leveraging Artificial Intelligence

But here's where it gets interesting: they're shining a spotlight on enabling whole-person care by connecting human services data. Our team was particularly thrilled about this aspect of the data strategy. When we look at the current landscape, human services data trails behind healthcare data in terms of availability, interoperability, and electronic exchange, especially at the point of care.

To bridge this gap, the strategy advocates for the establishment of comprehensive data standards, accessible standard taxonomies for human services provider information, improved tools for managing consent and household relationships, and enhanced matching and linkage capabilities. Additionally, it calls for expanded provider onboarding and aligned incentives to promote data flows.

Enhancing interoperability in human services data would yield significant improvements in various aspects of service delivery, including case management, coordinated care, closed-loop screening and referral, expedited enrollment into benefit programs, and more efficient program design and delivery.

Despite substantial investments in interoperable health data exchange, such as through initiatives like the 2009 HITECH Act, CMS's Meaningful Use program, the 21st Century Cures Act, the strategy underscores the need for similar investments in human services data exchange.

Moreover, the strategy emphasizes aligning investments, requirements, and policy levers to promote and support human services data interoperability and infrastructure buildout, leveraging existing health IT alignment policies where applicable. Further sections in the strategy delve into the development of human services representation in standards-development bodies, identifying gaps in standards and infrastructure, and partnering with organizations to strategically develop human services standards.

Additionally, it proposes launching interoperability pilots, designating an office for human services interoperability within HHS, and establishing policies on AI in HHS. These measures collectively aim to enhance data standards, interoperability, and the responsible use of AI technologies across the health and human services spectrum.

As we delve deeper into the integration of health data and human services, it becomes increasingly evident that consent management will play a pivotal role in bridging the gaps between these two domains. At POCP, we've been actively engaged in consent work for several years, collaborating closely with the Stewards of Change Institute (SOCI).

Our team has been at the forefront, contributing expertise to various initiatives, including SOCI’s “Modernizing Consent to Advance Health and Equity” report. We've also partnered with SOCI on their consent learning lab, held in conjunction with HIMSS during their annual global conference in 2023. If you're curious about the results of our efforts, you can check them out here.

The Learning Lab was specifically designed to tackle the challenges surrounding consent-to-share, recognizing its national implications for better integrating social determinants of health, improving person-centered care, and enhancing care coordination across sectors.

Excitingly, SOCI will be hosting another consent workshop at the upcoming HIMSS annual global conference in March 2024. If you're interested in attending and diving deeper into consent management, reach out to Daniel Stern at Stewards of Change for information about the event. It's an excellent opportunity to stay at the forefront of this critical aspect of healthcare transformation.