Just Released: Toolkit for information exchange initiatives from the Office of the National Coordinator of Health IT at HHS

Diagram of the SDOH Information Exchange Foundational Elements: Community Readiness and Stewardship, Mission and Purpose, Values and Principles are all the baseline foundation. Then Policy, Legal, Measurement and Evaluation and Financing is built on top. Finally, Implementation services, Technical Infrastructure, and User Support and Learning Network are key elements. All tied together by Governance.

I’m excited to share with you this toolkit for information exchange initiatives that aim to address the social determinants of health – shared by the Office of the National Coordination for Health Information Technology at the US Department of Health and Human Services (known as ONC). The toolkit (PDF downloadable here) synthesizes subject matter expertise from across the health, human, and social service sectors to offer guidance on the design and implementation of initiatives to enable information exchange among healthcare and social care providers.

This toolkit largely addresses issues beyond resource directory information, and yet it reflects many of the lessons learned and strategic objectives of the Open Referral initiative. It may be helpful for communities that are working to improve their supply chain for resource directory information – as well as communities for which resource directory information is just one piece of a more complex strategic goal. I’ll offer some background context below:  Continue reading

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Introducing the Whatcom County Resource Information Collaborative

This post is brought to us by Kristi Slette, Secretariat of the Whatcom Resource Information Collaborative in Washington state. Welcome, Kristi!

Washington state’s Whatcom County – the north western most county in continental U.S. – is a resourceful community with many collaborative community-based organizations that serve residents in need.

For many years, the leadership and staff from many of these organizations have voiced a desire to improve the accessibility and reliability of information about resources available in our community. In the past, this desire sparked several attempts to develop a centralized resource directory – but in each instance, our vision was hampered by the complexities of this challenge. We all shared the same goal, but different organizations had different needs and interests; when it came time to address all of them in one single website, we struggled to move forward together.

Learning from the past

In 2019, a series of community assessments and strategic planning sessions once again surfaced the need for a resource directory as a priority for Whatcom County, and a coalition of human and social service organizations convened to address this challenge with fresh eyes. This time, we sought to learn from previous efforts.

Through extensive dialogues with three different groups – social service providers who had been involved in the previous resource access initiatives, the conveners of those initiatives, and managers of current resource directories in our area – we perceived a set of key themes: the importance of leadership, human capacity, and buy-in from the community.

Through this reflection, we recognized that technology – which had previously been our primary focus – is actually only part of the solution. Rather than just designing a new tool, our new initiative would need to focus on building the capacities and relationships that will be needed to ensure that any such system is adaptive, sustainable, and trustworthy.

Building capacity for collaboration

In 2021, having made it a priority to improve access to resources for families with young children, the Whatcom County Health Department provided some seed funding to support our new initiative to establish a resource directory information system for the county. This time, we resolved to build a system that would be collectively “owned” by our community as a whole. Continue reading

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Tackling Data Dilemmas in Social Care Coordination: A Whitepaper on Community Information Exchange

Last year – with sponsorship from Robert Wood Johnson Foundations’ DASH program, and in partnership with the Regional Data Alliance at University of Missouri St Louis – I co-authored a whitepaper that aggregated research and recommendations from across the emerging field of “social care coordination.”

This paper provides a strategic framework in which to understand Open Referral’s work in the context of human service directory data infrastructure and governance, and it also offers a broader view of the related but very different challenges of sharing information about people through coordination among service providers.

The whitepaper is available in PDF here – as well as in this ‘live’ version upon which we invite readers to share feedback. Having received significant positive feedback from experts in the field of healthcare informatics, I’m excited to share it here with the Open Referral community.
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Evolving the DC Community Resource Information Exchange’s Inventory Capabilities

In the District of Columbia, we’re developing a new approach to the very old problem of resource directory information management. Years ago we shared the story of the first phase of our work here on this blog, and we’re now excited to share results from our second phase. 

The DC Community Resource Information Exchange initiative (DC CoRIE) is an initiative to develop infrastructure and capacities to support coordination of care across health and social service sectors in the District of Columbia. Led through partnership among government agencies, community organizations, and technology providers – including the DC Department of Health Care Finance, the DC Primary Care Association and its DC-PACT coalition, and CRISP DC – DC CoRIE seeks to enable exchange of information about resources, and about people, across diverse organizational contexts and technology systems, in promotion of equitable health outcomes. 

One of DC CoRIE’s primary goals is to establish a sustainable supply of comprehensive, reliable information about the resources available to people in need. In 2019, we discussed this goal with a group of people who already maintain resource directories, and named the central challenge of this problem: resource directory information requires significant effort to reliably maintain, and at the same time, people want to use it not just in one “centralized” system but across an ecosystem of distributed contexts and technologies. In order to pursue this vision of a healthy information ecosystem, we resolved that our work should leverage the assets that are already in our community. (See the report from our participatory deliberation process here). Together, we identified three objectives for this phase: 

  1. Prototype resource directory information system that is designed for interoperability – such that the contents of the CRI could be accessed by any third party system.
  2. Develop a collaborative network of data stewards who will support this system by sharing data management responsibilities.
  3. Demonstrate the potential for this system to serve as a canonical source of open data about local human services.

In 2021, we accomplished each of these objectives – and we are now initiating our next phase, through which we will formalize this framework. Check out our final report for this phase here.

Below, we’ll provide more context for our project’s objectives and the path ahead.

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Introducing NCCARE360: a coordinated statewide resource referral platform

NCCARE360

[This post is from Laura Marx, President and CEO of United Way of North Carolina. Welcome, Laura!] 

In 2019, the first statewide health and human service care coordination platform launched in North Carolina: NCCARE360.

Part of a broader healthy opportunities network envisioned by the state Department of Health and Human Services (NC DHHS) — NCCARE360 provided our state an opportunity to build a collaborative model of care coordination between health care providers and community based organizations (CBOs) focused on ensuring patients connect with services addressing social determinants of health (SDoH).

NCCARE360 is supported by the Foundation for Health Leadership and Innovation in partnership with NC DHHS. The United Way of North Carolina/NC211 is building this care coordination infrastructure in partnership with Expound Decision Systems and UniteUs.

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Introducing Open Referral’s data transformation toolkit

We’re excited to introduce a set of tools that make it easier to standardize resource data.

Community resource directory data (i.e., information about health, human, and social services available to people in need) is deceptively complex. In order to accurately represent the relationships between organizations, the services they provide, and the locations they are offered, Open Referral’s Human Service Data Specification (HSDS) calls for multiple tables, linked together — which can be challenging to work with. HSDS addressed this challenge by calling for a set of CSV files to be bundled together by a ‘datapackage’ which would specify the tables’ contents and relationships in a single machine-readable file.

Few of the members of our community, however, were familiar with datapackages and how to create them. So we’ve now made it easier to facilitate this complex approach to resource data sharing!

Thanks to the Open Knowledge Foundation, which developed the standard format for JSON datapackages, we’ve now upgraded our specification and associated tools to make it easier to produce, share, and read standardized resource data in the HSDS format, datapackage and all. Continue reading

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The DC Community Resource Information Exchange: Phase One Report

The District of Columbia’s community of health, human, and social service providers are struggling with a familiar challenge: they want to be able to more effectively coordinate care among their patients and clients, yet their systems can’t currently ‘talk’ to each other.

In response to this issue, DC’s Department of Health Care Finance (DHCF) initiated the DC Community Resource Information Exchange (DC CoRIE) to develop data infrastructure that supports coordinated screening, referral and tracking across a range of health, human, and social services in DC. DHCF selected the DC Primary Care Association (DCPCA) and Open Referral to lead an initial planning phase to help understand how to build infrastructure that would facilitate these functions. As part of this planning phase, we were tasked with the development of a Community Resource Inventory that can sustainably aggregate up-to-date information about the health, human, and social services available to DC residents. Continue reading

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The Florida Legal Aid Resource Federation: Pilot Report

After two years of development, we’re pleased to share details of our successful Florida Legal Aid Resource Federation pilot!

Initiated in 2016 (see our original post here) and completed in 2018, with support from the Legal Services Corporation and the Florida Bar Foundation, the Florida Legal Aid Resource Federation (FLARF) was a complex project with a simple goal:

We aimed to ensure that accurate information about Florida’s legal aid providers can be reliably updated by those providers in one place – one official record! – and subsequently shared as standardized, canonical open data. (This pilot goal was directly in the service of our ultimate goal: to ensure that this information can be found and used in any given channel through which someone might look for it.)

The pilot phase of this project has concluded successfully! 

The FLARF pilot yielded a functioning ‘beta’ system through which resource data can be shared among every organization that receives grants from the project’s primary funders. (This includes about 90% of the legal aid resources in the state!) This information is now accessible to each legal aid provider in Florida within their own case management system – improving their ability to refer clients from one legal aid provider to another.

We’re now beginning work on additional implementations that will make this data accessible through more and more channels (such as through integration with resource referral call centers, medical-legal partnership programs, even just better search results in Google, etc).

Read our complete final report on this project here. Continue reading

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Miami Open211 Phase One: Our Report

Last year, the Miami Open211 project set out to demonstrate that an information-and-referral helpline operator can evolve into an open platform — providing machine-readable data as a service to its community — in ways that are both technically efficient and institutionally sustainable.

This project, which began in partnership with Switchboard of Miami, was Open Referral’s first formal pilot with a 2-1-1 provider.

Last week, we submitted the final report for this first phase of innovation. Many thanks to the Children’s Trust of Miami-Dade County, which funded our experiment, and Jewish Community Services of South Florida, the new steward of Miami-Dade’s 2-1-1 service. With their blessing, we are excited to share our findings with the Open Referral community.

See the Final Report document here.

And check out a summary of our key accomplishments below. Continue reading

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