Patient Satisfaction News

Including Family Caregivers in Patient Engagement Strategies

While it's critical for providers to focus on consumer-centric patient engagement strategies, they must also identify the benefits of engaging family caregivers.

By Sara Heath

Seldom do patients approach their healthcare alone, but rather seek support from a network of caregivers, family, and friends. As such, providers need to understand how these individuals fit into patient engagement strategies.


Below, has broken down the various fundamentals providers must know in order to understand the role family caregivers play in patient care.

Caregivers and families help drive accountable care

Family and caregiver involvement has the potential to vastly improve patient care. These individuals act as a patient support system, and not just emotionally, but through reinforcing care and treatment plans as well.

By enlisting the help of family members and other designated caregivers, patients can receive help getting to their doctor’s appointments, sticking to their treatment plans, and managing their chronic illnesses.

READ MORE: Patient EHR Note Input Boosts Patient-Provider Communication

According to Mark Wagar, president of Heritage Medical Systems, this kind of caregiver activation is a huge driver of accountable care. Providers simply cannot single-handedly provide the sort of engaging care necessary to care for the whole patient, and therefore need the help of families and caregivers to help fill in the gaps.

“Maybe if [the patients] live in an apartment building in an urban setting, maybe they have a couple of friends who are the best persons to talk with them and help us get information and figure out the best way to access them,” Wagar said in a recent interview. “If someone’s relatively isolated, get some kind of community care worker, a local person they trust to visit once in awhile.”

While patients often come with their designated support system, Wagar says it is also the responsibility of the provider to determine these networks. By asking patients the right questions during preliminary care encounters, they can discover who will support the patient after they have left the office.

“If you’re able to outreach to them, if you’re able to help them engage with their lifestyle – things some of which have nothing to do technically with medical benefits – you can change the severity of things that inevitably happen,” Wagar stated.

Family and caregivers ease care transitions

READ MORE: PCORI Works to Drive Patient-Centered Health Research Design

Research continues to show that family caregivers play a major role in at-home care, specifically in follow-up care and care transitions.

In a study published in the American Journal of Managed Care, researchers found that patients with family caregivers involved in the discharge process were five times more likely to complete post-discharge care activities and attend a 30-day follow-up appointment.

Despite these major benefits, family caregiver involvement has been somewhat neglected, the study authors said.

“Family caregivers’ efforts can enhance patient engagement, yet formal involvement of family caregivers in post hospital communications has been historically underemphasized,” the researchers noted. “For these and other reasons, quality improvement agencies promote inclusion of family caregivers in the inpatient clinician-patient partnership.”

While the researchers noted that the reasons for this are unclear, it may be associated with the accountability patients feel when working with a family caregiver. These results also may be due to the concern the family caregiver feels toward the patient, and their activation to participate in the patient’s health.

READ MORE: MGH, Healthwise Partner for Shared Decision-Making Program

Caregivers enable care coordination

While the patient and provider team are often capable of handling care coordination efforts effectively, the presence of caregivers help bring that coordination a step further. In the case of patients with fewer capabilities – children, for example – caregivers play a significant role.

Just last year, one children’s agency saw the benefits of letting caregivers into children’s patient portals in order to coordinate their care. At the Ventura County Human Services Agency and The Children’s Partnership, healthcare workers saw improvements when caregivers were involved in foster childrens’ patient portals.

“Anecdotally we are seeing some parents really engaging with the new tool,” Korey Copozza, director of Electronic Care Coordination Initiative at The Children’s Partnership, told “Ventura County has seen some feedback come from foster parents as to the advantages of the new system.”

While this was simply one case study which examined caregiver interaction with foster children, the principles still stand. Patient populations like children aren’t always the sole proprietors of their health information. Because of that, providers must engage their caregivers (in this case, the parents) in order to facilitate a better engaged healthcare interaction.

Caregivers may gain health data access

In order to facilitate the above-mentioned engagement of family caregivers, healthcare professionals must understand the access to which they’re entitled with regard to health data.

As noted above, parents have the right to view their child’s health records under HIPAA regulations. The challenge there is engaging those patients in their child’s care.

Caregivers for other patient populations may also have access to patient records under certain circumstances. Patients may appoint personal representatives to whom health data may be disclosed. In these instances, representatives are appointed on behalf of emancipated minors, unemancipated minors, and the deceased.

According to HIPAA, providers must disclose health data to personal representatives just as they would the patients themselves, unless in extreme circumstances.

When a physician or other covered entity reasonably believes that an individual, including an unemancipated minor, has been or may be subjected to domestic violence, abuse, or neglect by the personal representative, or that treating a person as an individual’s personal representative could endanger the individual, the covered entity may choose not to treat that person as the individual’s personal representative, if in the exercise of professional judgment, doing so would not be in the best interests of the individual.

Patients may also direct a PHI disclosure to individuals who are not personal representatives so long as he or she provide written consent and clearly identifies the individual to receive the disclosure.

While it is critical for providers to understand and honor the wishes of their patients, they must also acknowledge that engagement goes beyond that. By understanding some of the primary benefits of family caregiver engagement, as well as caregiver rights, providers can start to enhance care on all fronts.


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