Integrated Child Care Model Groups Face Data Sharing Challenges


This first assessment report on the Center for Medicare & Medicaid Innovation’s Integrated Model of Care for Children (InCK) identified several challenges, including the need to navigate complex legal and regulatory environments to establish patient use agreements. data with organizations that provide services to children. Model participants also report issues with developing new data platforms to share information to support service integration.

CMS provided funding to the InCK model to implement child and family centered delivery models and locally designed pediatric alternative payment models. Delivery models aim to expand care coordination beyond health care to include essential childhood services (such as schools, housing, and food services) and address unmet service needs. Other goals include incentivizing and facilitating improvements in quality of care, reducing Medicaid expenditures, and reducing avoidable out-of-home placements among children.

At the start of the pre-implementation period, eight lead organizations received funding to implement the InCK model. At the end of the pre-implementation period, seven organizations moved into the five-year implementation period: Ann & Robert H. Lurie Children’s Hospital (Chicago, Illinois); Montefiore Medical Center (Bronx, New York); Clifford W. Beers Guidance Clinic (New Haven, Connecticut); Duke University, in partnership with the University of North Carolina (select North Carolina counties); Hackensack Meridian Health, in partnership with the Visiting Nurse Association of Central New Jersey and the New Jersey Health Care Quality Institute (Central New Jersey); Children’s National Hospital (eastern Ohio); and Egyptian Department of Health (Southern Illinois).

CMS has contracted with Abt Associates Inc. and its partners, Bailit Health and Insight Policy Research, to evaluate the implementation and impact of the InCK model for each and all model winners.

During the pre-implementation period, the evaluation team characterized the model’s pre-implementation activities and the experiences of providers, staff, patients, and caregivers; information captured on the local context; provided personalized support on model requirements; create measurement specifications and data models for data collection; and determined a comparison group for each winner.

All of the winners (AR) cited the need to improve care systems for children and caregivers as a primary reason for applying to the model, and each created individualized approaches based on the needs of their communities and local context. .

The report notes that major organizations have struggled to establish Data Use Agreements (DUAs) with state agencies that manage Children’s Basic Services (CCS) data. The most commonly cited challenges were legal barriers to data sharing and staff bandwidth issues related to the COVID-19 public health emergency (PHE). “Leaders from several organizations reported that program staff from state CCS agencies supported data sharing for the purposes of the InCK model and were even enthusiastic about the model; however, attorneys for these agencies reported that legal regulations made it difficult and sometimes impossible to share personally identifiable data at the individual level,” the report said.

For many groups, state CCS agencies may share data with the state Medicaid agency for the purposes of implementing the model. However, many agencies have raised concerns about sharing individually identifiable data that would be submitted to the CMS. Groups in North Carolina and Ohio had the most success negotiating with partners at the end of the pre-implementation period.

Several leaders reported that CCS organizations and other CCS state agencies have raised the most concerns about data on behavioral health, substance use and child well-being. Some RAs reported that establishing data sharing agreements with child protection agencies was particularly difficult, and that their respective agencies might not be able to share identifiable data at all.

Among the winners, behavioral health care providers said they typically have little information about a patient’s other social or health needs. Similarly, physical health providers are unaware of the services their patients may receive from other providers or organizations. For example, an adolescent care provider in the NC InCK area said the only way to know if a patient is receiving behavioral health services at school is if the patient tells him.

Despite having data-sharing systems in place and pre-existing closed-loop referral systems, physical and behavioral health and social service providers among the awardees described having little knowledge about the services that patients may receive in other contexts.

The winners planned to use existing or newly created data systems for service integration coordinators to track their work; store maintenance plans; and facilitate information sharing among stakeholders. For example, OH InCK has contracted with a third-party vendor to build a platform called Apricot 360, which will allow a family’s single point of contact to invite members of the patient’s care team to share information between them.

Developing new virtual platforms and integrating them into existing workflows and information-sharing processes required considerable effort during the pre-implementation period, according to the report. For some organizations, delays in finding a vendor to develop these platforms, managing that vendor, and then ensuring the vendor can produce a tool with the functionality originally promised was a significant challenge, the report said. .

For some of them, procurement took longer than expected and design work was slow as their planned approach evolved during the pre-implementation period, according to the report. “Towards the end of 2021, two of the joint providers, Unite Us and NowPow, merged. RAs reported that staff turnover and other changes resulting from the merger caused further delays. CT InCK Embrace New Haven originally planned to use Unite Us, but decided to move forward with a different vendor for certain activities after encountering challenges in executing the planned approach.

“Finally, in late 2021, some ARs raised concerns that these virtual platforms would not have the robust features originally promised by vendors. implementation, most of the RAs were still working on finalizing these systems and integrating them into existing workflows. It remains unclear whether the functionality of the system allows the RAs to implement as planned.”


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