The following is a guest article by Jolie Ritzo, VP of Strategy and Network Engagement at Civitas Networks for Health
Health data management in 2024 is both intricate and complex. From integrating artificial intelligence (AI) into healthcare and health data platforms to establishing robust data standards that reach beyond clinical settings to managing patient consent and increased patient access, it is fair to say that health data exchange and data management have many important intricacies worthy of careful attention. The scope of health data sharing and use of health data have expanded far beyond electronic health record adoption in healthcare settings to encompass data sets inclusive of demographics, behavioral health, social determinants of health (SDOH), and public health.
This expansion not only amplifies the volume of data but also the need for meticulous management to ensure quality, privacy, and trust are maintained across the healthcare and community care continuum. Here are some of the most exciting and challenging aspects of both exchanging and using comprehensive health data this year and ahead.
Community and Data Governance: Catalyzing Action
It’s been said before that “data exchange and community action happen at the speed of trust”– this couldn’t be truer. For meaningful health improvement to last, both community and data governance are a must. Collaboration and public-private partnerships are needed to actively involve many stakeholders in decision-making. Importantly, communities most impacted by poor health outcomes need to be at the table to inform interventions and initiatives. Nonprofit health data collaboratives – HIEs, CIEs, APCDs, regional health improvement collaboratives, community care hubs, and quality improvement organizations – serve as critical infrastructure by not only moving and using data but also by acting as neutral community convenors.
At a macro level, Civitas Networks for Health brings together over 170 member organizations from across the country, each committed to transforming healthcare through data-driven insights and multi-stakeholder health improvement. Our collective effort is rooted in the principle of empowering communities by equipping them with the tools and knowledge to make informed decisions. Through robust community involvement and data governance, Civitas members across the country are ensuring that diverse voices are heard, and local needs are met. Fostering an ecosystem where data serves as a catalyst for community health improvement and multi-stakeholder collaboration increases the inclusivity of important community voices which lays the foundation for more sustainable solutions.
Standardizing SDOH Data: Pioneering Whole-Person Care
In 2023 the Gravity Project, with generous support from the Robert Wood Johnson Foundation, partnered with Civitas to implement Gravity’s unified data standards for SDOH in communities around the country. This initiative is a testament to striving for more holistic health and social care, recognizing that health outcomes are influenced by many factors beyond traditional clinical data. By standardizing SDOH data, there is an opportunity to better understand patients’ needs and to communicate these needs with other providers supporting an individual’s care in various community settings. The ability to make referrals across care settings and to close the loop is critically important in treating the whole person.
Harnessing AI with Oversight from Trusted Infrastructure
The potential of AI in revolutionizing health care and health data management is immense. However, the deployment of AI in health care necessitates vigilant oversight to prevent biases and ensure data integrity. Civitas suggests that by leveraging the established infrastructure of Health Information Exchange (HIE) and Health Data Utility (HDU) models, we can develop a robust framework for AI governance in health data management. This approach would not only enhance data management capabilities but also ensure that AI applications are developed and utilized in an ethical, equitable, and patient-centered manner. By fostering responsible AI innovation, we aim to harness its power to improve health outcomes while safeguarding patient rights and data privacy.
Consent Management: Enhancing Privacy and Precision
At the heart of patient trust and data integrity is the critical issue of consent management. Patient consent is the gateway to having accurate patient data that can inform better care. Recognizing that patients may consent to some of their data being shared with some of their providers and within a certain time, those capturing consent and those exchanging health data need to be equipped with the most effective methods and tools. As an example, some HIEs and other entities exchanging health data are adopting and working to mature Data Segmentation For Privacy (DS4P) standards to safeguard sensitive health information.
This technical approach holds the promise of accurately tagging and managing health data, providing patients with the assurance that their selections and their privacy are respected and upheld. It can streamline the consent process, ensuring that only the necessary information is shared with the right entities, at the right time. This precision not only enhances patient privacy but also empowers individuals with greater control over their health information, fostering a more trustful care environment.
Forging Ahead: Health Data Management Today and Tomorrow
As we contemplate the future, it’s clear that the interplay between emerging technologies and new care models will continually redefine health data management. Embracing a culture of continuous learning and adaptation, prioritizing patient-centric strategies, and fostering inclusive governance is pivotal.
As new technologies, private investment, and for-profit solutions proliferate health improvement and health data management, we cannot overlook the importance of non-profit multi-stakeholder data collaboratives that are committed to governance. With such infrastructure, we can drive innovative solutions that are resilient to the ebbs and flows of the healthcare landscape.
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