The Critical Role of Data Infrastructure in Community-Based Organization Networks

Beth Blair, Aging and Disability Business Institute, USAging
An image showing a diverse group of people putting their hands together in a circle.

Networks of community-based organizations (CBOs) led by community care hubs (CCHs) are an increasingly common vehicle for contracting between CBOs — such as Area Agencies on Aging (AAAs) — and health care entities. CCHs are community-focused groups that support networks of CBOs that provide services addressing health-related social needs. This arrangement centralizes administrative functions and operational infrastructure for health care contracting and partnership. To promote contracting between CBOs and health care entities, the U.S. Administration for Community Living (ACL) and other stakeholders are investing in the development of new and existing CBO networks and CCHs.

The advantage of this system is that CCHs manage the contracts, allowing member CBOs to do what they do best — provide services that support community living, optimal health, and quality of life for older adults and people with disabilities or chronic conditions. Contracting through CBO networks ensures greater geographic reach and simplifies contracting for health care partners. Participation in networks has been shown to encourage contracting with health plans among AAAs.

To better understand how networks and CCHs operate, USAging’s Aging and Disability Business Institute partnered with Scripps Gerontology Center at Miami University to conduct a qualitative study of eight CBO networks in 2022. Scripps conducted 23 semi-structured interviews, representing CCHs and network member CBOs. The majority of CCHs were AAAs, and network members included AAAs, Centers for Independent Living (CILs), and other types of CBOs. 

The networks included were diverse in structure, geographic region, and reach, with some serving regions within a state and others an entire state or multiple states. These networks were also at different stages of maturity — some in operation for a decade and others only a few months at the time of the interview.

The interviews revealed details about how CBO networks operate related to data access and exchange, member communication, quality assurance, financial operations and management, and costs and benefits to members of network participation. This blog post explores the challenges in data access and exchange in contracting between CBO networks and health care entities, which emerged as significant challenges for CCHs and network members during the interviews.

Data Access and Exchange in CBO Networks

Data access and exchange, and the infrastructure supporting these functions, form a data ecosystem essential to the operation of a CBO network, including billing, referrals and reporting of outcomes. As the full report from the qualitative study notes:

“Ideally, data are entered into the ecosystem accurately and easily once, after which they are shared within the network with those entities that should have access; they are stored safely and protected; and they are available for providing care, documenting services provided, improving services, making sound business decisions, making sure that providers are paid, ensuring quality, and measuring performance by each part of the network.”

Contracts between CCHs and health care entities require multiple data exchanges between multiple parties — the CCH, the CBO network members, and the health care entity (HCE). Figure 1 illustrates this process. The CCH receives and aggregates data on services provided and people served from its member networks (Arrow A). The CCH then provides this data to the HCE for purposes of payment and reporting (Arrow B). The HCE then provides outcomes data to the CCH (Arrow C) which provides the relevant data back to the member CBO (Arrow D).

Figure 1: CBO Network Data Exchange Model: CCH, CBO Network Members, and Health Care Entities

CBO networks may experience challenges with data access and exchange at different points and for different kinds of data, such as units of service, client characteristics, billing, and outcomes. Networks that had contracts with multiple health care partners reported that they were often required to enter data into multiple systems, including social care referral platforms, since each contracting partner required the use of its own system. Some network member CBOs faced barriers to accessing data due to limited infrastructure, HIPAA rules or other data protection requirements. In some instances, CBOs entered data into two systems — that of the CCH and the CBO’s own — to ensure that the CBO could access its own data.

Networks used a variety of methods to exchange data, including existing systems, platforms required by the health care partner, new systems, file-sharing platforms, spreadsheets and sharing de-identified information by email. All worked with the tools they had, though many expressed a desire for better systems. Some networks worked with software companies and consultants to build systems to support efficient data entry and sharing. In particular, they wanted to build the right system, have dedicated staff managing data, and improve access to make better use of the data.

As one CCH reported, “I thought there would be…more appropriate integrated systems out there, but we’re finding, and we’re not the only ones, it’s just a real challenge to put together an IT system that we can afford, and that will meet our needs.” Another said, “We're still getting to that place [of putting usable data in the hands of network members]. We're not fully there. But hopefully, through our IT assessment and our repositioning, you're looking at integrators, and what we need to do to provide more dashboards for our providers. I think we could get to a better place. But we've really come a long way.”

Supporting CCH Data Capacity

All the networks interviewed agreed that data access and exchange were challenges, leading the authors to recommend that CCHs invest in data ecosystems that are beneficial to them and their members, including data that is easily accessible for all organizational participants. This recommendation is also echoed by the Partnership to Align Social Care, which identifies information technology and security as one of the six core functions of a mature CCH.

Building these capabilities is time consuming and expensive, and the everyday challenges of running a network leave little time and resources to search for solutions. However, there is increasing attention to this issue. Manatt Health and the Partnership to Align Social Care, in a playbook for state Medicaid agencies working with CCHs, describe the opportunities for Medicaid agencies to leverage various authorities to support up-front costs for CCHs and CBOs to establish partnerships, including costs for IT infrastructure to exchange data, as well as to support CBOs to deliver health-related services.

Additionally, in an article in Health Affairs, authors from the Department of Health and Human Services outlined a number of policy opportunities to support interoperability between CBOs and health care entities. This included supporting the adoption of interoperable health information technology standards, such as the SDOH data standards being developed by the Gravity Project.

The importance of data ecosystems that efficiently support contracting networks is clear.  To meet this need, the new Center of Excellence to Align Health and Social Care, operated by USAging and funded by ACL, will include technical assistance on information technology and shared services infrastructure as part of its work supporting the development of CCHs and the network model.  

Looking Ahead

The findings of the network study show that data access and exchange are vital for CBO network development and functioning, and illustrate the necessity of initiatives focusing on this aspect of network infrastructure. Health care partners can also use these findings to better understand the data needs of their contracting partners, including both CCHs and network members. CBO networks are an important step in aligning health and social care. Working together to identify solutions that meet the needs of all stakeholders will ensure better care for the older adults and people with disabilities who are served by contracting partnerships.