RAND: Boost Efforts to Integrate Family Caregivers Into Healthcare Teams

“Providers want to include family caregivers in formal healthcare teams, but they have so many responsibilities already that it is hard to add caregivers to the mix. Family caregivers need a lot of information, and they do not know who to turn to. We need to find ways to help everybody communicate with each other and coordinate better,” said Esther Friedman, PhD, a behavioral and social scientist at RAND, and a professor at Pardee RAND Graduate School in Santa Monica, California.

The report says healthcare providers, payers, and policymakers should focus on six areas to promote integration of caregivers into formal healthcare teams.

1. Identifying and recording caregiver information

The first step to promoting integration is taking a three-part approach to gathering information on family caregivers, the report says.

• Providers should ask patients for permission to work with family members and learn about the caregiving routine.
• Caregiver assessments should be included in documentation of healthcare encounters. “The goal is to inform providers about who is participating in a patient’s care and what tasks each person is doing,” the report says.
• During advanced care planning with primary care physicians, patients should be asked whether family members should be included in the conversation.

“One of the fundamental barriers to integrating family caregivers into the formal healthcare team is the difficulty that they face in identifying caregivers. There are several difficulties. There are some individuals who do not self-identify as caregivers. There could be multiple caregivers. And patients may not want to identify caregivers out of worry over losing autonomy and private healthcare information,” Friedman said.

2. Incentivizing provider engagement with caregivers

To boost provider engagement with caregivers, one recommendation in the report is adoption of payment models that allow providers to bill for time spent engaging caregivers.

Another recommendation to increase engagement is to promote value-based healthcare delivery systems. “Value-based healthcare systems reward providers on the quality of care, thereby incentivizing providers to coordinate care with family caregivers if doing so would improve patient health outcomes,” the report says.

“We did hear from our interviewees that financial incentives do need to be aligned to promote provider engagement with caregivers. But there definitely is more work that needs to be done to determine the best ways to incentivize providers to engage family members,” Friedman said.

3. Investing in supportive services for caregivers

“Increasing supports for family caregivers can reduce the burden on caregivers and give them time to coordinate with the healthcare team,” the report says.

The report makes four recommendations for investing in supportive services for caregivers.

• Routine assessments of caregivers to give clinicians and care coordinators information about caregiver needs and the best ways to support caregivers
• Expanding programs that pay caregivers for their efforts such as Medicaid programs
• Boosting caregiver supports in Medicare Advantage health plans
• Expanding paid leave policies to help caregivers decrease income loss associated with taking time off to care for family members

“There can be more implementation of routine assessment of caregivers by payers. They can assess caregiver needs and provide payments to family caregivers,” Friedman said.

4. Increasing utilization of care coordinators

“Having a single designated person who connects caregivers to the training and clinical resources they need can provide valuable information, improve communication, and save time for both caregivers and the care team,” the report says.

One recommendation in the report is to expand payer utilization of care coordinators to connect caregivers to clinicians and healthcare information beyond high-risk patients. “Efforts in this policy area would expand access to care coordinators for all patients with care needs, provide opportunities for caregivers to connect with care coordinators separately to help meet their needs, and allow for interaction with clinicians and nurses as needed,” the report says.

Increasing utilization of care coordinators can drive efficiency gains for providers and caregivers, Friedman said. “Expanding the use of care coordinators could benefit providers by alleviating some of the burden on providers as being the primary point of contact. Care coordinators also provide family caregivers and patients with their own centralized point of contact.”

5. Train providers and caregivers to improve communication

Communication training for clinicians and care coordinators can help them discuss complicated clinical information with caregivers who have limited healthcare literacy, the report says.

Communication programs should also account for diversity among caregivers, the report says. “Given the diversity of caregivers’ cultural backgrounds and needs, it is essential for clinical providers and care coordinators to learn how to communicate with different types of caregivers.”

Friedman cited a Veterans Administration program as a possible model for communication training.

“The VA Campaign for Inclusive Care, which is one of the case studies we had in our report, provides an online training program specifically for VA healthcare providers. It teaches them how to integrate family caregivers and covers a variety of topics, including communicating with caregivers, privacy regulations, and how to understand the caregiving journey from the caregiver’s perspective,” she said.

6. Technologies that foster caregiver-provider integration and information-sharing

“Family caregivers need access to patient health information and mechanisms for sharing information with clinical providers and care coordinators,” the report says.

Several technologies to promote caregiver-provider integration and information-sharing already exist or could be developed, the report says.

• Expanding access to electronic health records and clinical notes
• Shared access features on patient portals
• Developing systems to record information about family caregivers
• Apps and other digital technologies that connect caregivers to each other and care teams
• Including caregivers in telemedicine visits and virtual clinics to share information in a secure environment

Healthcare providers are a key players in these technological solutions, Friedman said.

“As primary users of existing technological tools, providers have a critical role to play in evaluating existing technologies. Providers can give feedback on which technologies work best to foster caregiver-provider integration and which technologies are easiest for caregivers to use. Providers also are the ones who can give suggestions for new technologies or new features that could be developed for existing technologies to improve coordination with caregivers to give them access to the kind of information that they request.”