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Aiming for Whole Health with Community-Centric Health Data Exchange

Guest Blog Post by: Waldo Mikels-Carrasco, Data Across Sectors for Health in partnership with Jolie Ritzo, Civitas Networks for Health

Health data exchange has evolved greatly since its inception in the early 2000s. As use cases have expanded, health information exchanges (HIEs), health data utilities (HDUs), and other health data collaboratives have improved efficiency of care coordination and information-sharing among patients, medical providers, payers, and public health, and other agencies. Though these data exchange-focused entities do not deliver care, they contribute to improved care, lowering costs and access barriers.

Initiatives like the Veteran Administration’s Whole Health Initiative are helping redefine medical care to encompass whole-human wellbeing. Both the CDC and the US Department of Health and Human Serviceshave pivoted their work to consider social determinants of health (SDOH) to be key indicators of health and health equity. As more providers and agencies move into delivering whole-person care, it is necessary to go beyond disease reporting and look for other data points that indicate a person’s well being. Collaborators like Gravity Project are leading the development of SDOH standards to allow for integration of critical data that highlights unmet health related social needs and that coordinates services beyond health care settings.

The infrastructure supporting whole-human health and well-being requires multisector data sharing. Because community-based organizations (CBOs) are often closer to patients’ communities and help develop a holistic understanding of the community, the patient voice is better represented, and sustainable patient health and wellbeing are more achievable when CBOs are in the health data collaboration. Community care hubs (CCH), which can assist in social care and community care coordination, are one way to fulfill this important role.

This is a powerful approach for improving health outcomes—and a challenging one to implement. Health data collaboratives are generally set up to share clinical data within the health care sector. Human services CBOs are typically meant to respond to a specific, local social need. CCHs and regional health improvement collaboratives can serve as neutral convenors and help to bring various stakeholders and sectors together.

The crux of the challenge is that you cannot engage in cross-sector data sharing without establishing a trusted relationship first. Civitas and its members are deeply committed to community-centric data sharing and governance. Our goal is to bridge data and doing and to be sure community partners across stakeholders are at the table.

Civitas member Data Across Sectors for Health (DASH) has supported hundreds of multisector collaborations in developing data-sharing practices since 2016, including several with HIEs as partners. As this case study and other DASH-supported initiatives demonstrate, multisector data sharing that improves patient success is built not solely on technical management but on partnership and trust between providers and between providers and the communities they serve.

DC PACT (Positive Accountable Community Transformation) in Washington, D.C., is a coalition effort of community providers in partnership with government agencies. DC PACT received DASH’s 2020 Learning and Action in Policy and Partnerships (LAPP) grant to build out its screening, referral, and look-up services component, called CoRIE.

Key activities that support this success:

• Build on existing partnerships using proven collaboration models: To build capacity, the DC PACT used collective impact, a model for tackling complex social problems as a coalition. The coalition’s administrative “backbone organization” is DC PCA (Primary Care Association), a longstanding and trusted health equity organization in the District of Columbia. Partners include more than 30 non-government organizations (CBOs, religious organizations, clinics and so on) and multiple district and regional agencies that address the various social determinants of health and related needs and services.
• Secure the right kind of support from government agencies and government funders: The District of Columbia government was on board and had already invested fully in developing an HIE, called DC CRISP. DC Medicaid, called DHCF, was essential for funding. These entities were willing to resource the initiative for its multi-year build-out and continuing operation, while also trusting the coalition organizations to do the planning. Implementation, and management of the work.
• Give it time: Coalition building started in 2016 with trust-building and dedicated work on commitments, common agendas and goals, communication protocols, and shared community health and wellness metrics so all parts of the process would be understood the same by all involved and evaluated appropriately. Only then did technical infrastructure begin, in 2020. 
  
• Build on existing technical capabilities: The coalition made a point to start with what was already working for people on the ground. They built their technical infrastructure on existing capabilities rather than installing an out-of-the-box solution or custom-building from scratch. Optimizing current workflows made for quick wins that could gain buy-in and build partnerships, and then targeted third-party solutions could be used to fill in where needed. Technical needs were vendor agnostic so various stakeholders could continue using the systems they already used.

Health data sharing is no longer just for those in health care. To achieve whole-person care, we must work collaboratively with community-based organizations and social service providers to expand the governance structure and build critical community partnerships. The DASH Framework offers a visual understanding of the requirements for an equitable data ecosystem shared across sectors.

Establishing partnerships and shared governance practices takes time, trust, and a shared vision that the hard work of creating these foundations will be meaningful. Funders can aid this process by funding the foundational work of coalition-building infrastructure, not just the work of production, and by providing the time, space, and resources during implementation for evolution and iteration.

by kmatheson

Fostering the Next Wave of Health Improvement and Interoperability Leaders: Civitas' Emerging Leaders Council 

Written by Jolie Ritzo, VP of Strategy and Network Engagement 

Strong and thoughtful leadership, innovation, and creativity are more crucial than ever in the health improvement and health data sharing industry. Recognizing the pivotal role of emerging leaders in driving this transformation, Civitas Networks for Health established the Emerging Leaders Council (ELC), a dynamic forum designed exclusively for rising leaders. This initiative underscores Civitas’ commitment to nurturing a new generation of leaders equipped to navigate and shape the future of health and health care through multi-stakeholder collaboration and data-informed approaches. 

A Unique Platform for Development and Collaboration 

The ELC serves as a vital platform for emerging leaders within Civitas’ full and affiliate member organizations, offering opportunities for professional growth, peer learning, and networking. Through this council, participants delve into critical leadership skills, gaining insights from expert presenters and engaging in meaningful dialogues on pressing industry challenges and opportunities as well as tips and tricks to navigate the complexity of leading projects and teams. 

“The ELC is an opportunity to connect with other mission-driven professionals developing in their career and leadership role. It has been extremely helpful to learn from other Civitas members about the work they do and how it connects to the mission, vision, and values of Comagine Health. Our learning and discussion on emerging models and new innovations in the world of health care data and collaboration, as well as the facilitated conversations on leadership development have helped form my own leadership values and priorities.” - Katrina Seipp-Lewington, Director, Community Health, Comagine Health 

Composition and Focus: A Collaborative Framework 

Comprising up to 20 members, the ELC maintains a diverse and vibrant composition, reflecting the breadth of Civitas' membership. With representation from small to large member organizations, health information exchanges, regional health improvement collaboratives, quality improvement organizations, and other national networks, the council ensures a rich exchange of ideas and experiences. Civitas is committed to helping members from across the national network better understand what other members do and where there may be opportunities to partner.  

Members of the ELC are selected for their proven excellence, growing leadership skills, and commitment to transforming health and health care. They are tasked with active participation in council meetings and are encouraged to share their expertise, fostering a culture of shared learning and mutual support. Having ready access to a professional network can be a great opportunity for leaders. The ELC aims to create this while also infusing inspirational presentations and discussions over leadership thought pieces.  

“Participating in the Civitas Emerging Leaders Council has been a win on multiple fronts. In addition to offering a space for growing leaders to focus on professional development, the ELC provides participants an opportunity to learn more about other Civitas member organizations and the innovative ways we are all working towards the same goal of bridging the gap between data and doing to improve health care. And my favorite part of it all is the networking and relationships we build in the process.” - Sarah Brinkman, Program Director, Superior Health Quality Alliance, Stratis Health 

The ELC convenes every other month, focusing on professional development topics and featuring guest speakers from across the health and health care spectrum. These meetings are complemented by networking sessions, facilitating deeper connections among members and fostering a supportive community of emerging leaders. 

Shaping the Future of Health Transformation Together – Meet Our Emerging Leaders 

The 2024 emerging leaders include: 

• Ami Hanna, Maternity Program Manager, Data Solutions, Comagine Health 
• Berenice Herrera-Lopez, Operations and Program Manager, Health Improvement Partnership of Santa Cruz County 
• Beth Nech, External Quality Review (EQR) Senior Manager, KFMC Health Improvement Partners 
• Cyndi Erives, Integrations Analyst – Manager, CyncHealth 
• Delaney Paterson, Client Engagement Manager, HealthInfoNet 
• Ellen Clewett, Program Manager, Illinois Public Health Institute 
• Heidi Wilson, Sr. Project Manager, Connie 
• Michelle Hunt, Assistant Director of Operations, North Carolina Health Information Exchange Authority 
• Jayme Piña, Director, Development and Engagement, Az, Contexture 
• Jillian Greenbaum, Assistant VP Population Health, HEALTHeLINK 
• Juan Nanez, Director of Programs, PHIX 
• Katrina Seipp-Lewington, Director, Community Health, Comagine Health, ELC Vice Chair 
• Kelly Richards, HIE Services Manager, Virginia Health Information 
• Kristen Schuster, Director, Health Quality Solutions, Mountain-Pacific Quality Healthcare 
• Mandy Johnson, Program Director of Quality Initiatives, Kansas Healthcare Collaborative 
• Megha Khatri Arora, Director of Analytics, Bronx RHIO 
• Niurka Lluveras-Hernandez, Associate Director of Finance and Operations, Civitas Networks for Health
• Patrick Meehan, Product Owner, Indiana Health Information Exchange 
• Sarah Brinkman, Program Manager, Stratis Health, ELC Chair/Civitas Board Member 
• Tammy Elliott, Client Services Manager, KFMC Health Improvement Partners 
• Van Le, Program Manager, PelEx

The ELC is more than just a forum – it's a launchpad for the next generation of leaders. Through this council, Civitas is not only investing in individual professional development but is also strengthening the collective capacity of its network to drive meaningful change. As these emerging leaders ascend, they carry forward Civitas' vision of a collaborative, data-informed, and equitable health care ecosystem. 

For Civitas members interested in learning more about the Emerging Leaders Council and how to engage in the annual nomination process of emerging leaders from your organization, email the Civitas team.  

by kmatheson

Oregon’s Collaborative Community-Led Health Data Utility Initiative

By: Jolie Ritzo, VP of Strategy and Network Engagement, Civitas Networks for Health

Community-led collaboratives are emerging as powerful catalysts for change in health care transformation. One such pioneering effort is taking shape in Oregon, where a unique approach to the Health Data Utility (HDU) model is underway. Collaborators from the initiative shared their experience at the Civitas Networks for Health 2023 Annual Conference. Their "Community-Led HDU Concept in Oregon" session provided deep insights into the importance of community-led governance, a commitment to working equitably, and the willingness to invite diverse perspectives to the table.

The Oregon HDU Model: A Community-Centric Approach

Rather than starting top-down the Oregon HDU approach is trialing building from the ground up. They are cultivating relationships and trust, building carefully, and working up to gain state recognition. The HDU’s foundation is built on the strong collaboration of various entities, including a Regional Health Improvement Collaborative (RHIC), Community-Based Organizations (CBOs), an HIE, an All-Payer Claims Database (APCD), and Federally Qualified Health Centers (FQHCs).

The session featured two Civitas members and one of their key partners, Meredith Roberts of Comagine Health, Erick Maddox of Reliance eHealth Collaborative , and Carly Hood-Ronick of Project Access NOW. Throughout their presentation, they highlighted Oregon’s statewide focus on addressing the health-related social needs of its diverse population. This approach underscores the significance of understanding and catering to the unique needs of local communities to best serve the population at hand.

A New Era of Data Sharing and Collaboration for Oregon

Oregon's HDU initiative is in its early stages, with outcomes still on the horizon. However, the path forward is marked by a strong emphasis on governance, data aggregation – encompassing claims, clinical, social, and public program data – and data quality. This comprehensive data approach is a cornerstone of the HDU model, ensuring a more holistic view of patients’ health needs through longitudinal enhanced records. This offers providers inside and outside the walls of health care an opportunity to provide more responsive and coordinated care.

Key Learnings from the Session: Community-Led HDU Concept in Oregon

A few key learnings from this session were:

• Partnerships Need to Be at the Core: The initiative is grounded in a collaborative spirit, bringing together various stakeholders so that a greater pool of perspectives is included at the outset and through partnership a greater set of services is provided to meet expanded use cases.
• Community-Driven Decisions are Critical: The community collective, not the state or other entities, is the primary decision-maker in this model. This approach prioritizes equitable representation and focuses on the community’s needs and voice.
• Relationships Over Technology: While technological platforms are essential, this initiative focuses on fair representation and equitable health care delivery rather than being tied to any specific tech platform.
• Governance and Inclusion: Efforts are underway to establish a governance structure that includes HIEs, CIEs, APCDs, CBOs, the state, FQHCs, and public health. The key lesson learned is the need for more CBOs and FQHCs at the decision-making table, ensuring a more inclusive and representative approach.

Looking Ahead: The Road to Equitable Health Data Sharing

The Oregon community-led HDU concept represents a significant shift in how health data is collected, shared, and used. It’s an explorative model that prioritizes community needs and voices, ensuring that data-sharing initiatives lead to meaningful and equitable health outcomes. As this initiative continues to evolve, it sets a precedent for other regions to follow, encouraging a more inclusive and community-focused approach to health data utilization.

For more information about HDU visit Civitas’ HDU page, and we encourage you to visit Comagine Health, Project Access NOW, and Reliance eHealth Collaborative’s websites for greater detail about the Oregon partners.

by kmatheson