Engaging Care Partners in Communication

Care partners (the family members and friends who support patients during and outside care delivery) play a critical—yet too often invisible–role in care. They assume wide-ranging responsibilities including care coordination, transportation, medication management, emotional support, and advocacy during medical appointments. Even though care partners frequently touch the healthcare system–both in-person and electronically–they are not routinely identified or supported.

A brief communication intervention

We are testing a self-administered communication intervention to effectively engage care partners of patients being actively treated for breast cancer.

The intervention involves the patient and their care partner completing a brief agenda-setting activity while in the waiting room to:

1) Clarify patient’s preference for communication support during routine visits

2) Elicit and establish a shared visit agenda

3) Give the patient the option to share access to their patient portal with their care partner.

Of course, our goal is to improve care quality and patient outcomes. The rationale for the intervention is that although care partners are motivated to support patients, they often do not have a defined role during visits, may not know the patient’s most important concerns. The communication intervention provides a structure for patients and companions to get on the same page.

In prior work, we found that this patient-care partner agenda-setting approach led to more patient-centered communication during face-to-face visits. Our new study extends this work to cancer care and clarifies the role of the care partner in electronic interactions through the patient portal, which can be a valuable resource for patient and care partner engagement.

Seeing the clinicians’ notes

Recently, our health system adopted OpenNotes as part of the Electronic Medical Record, which affords patients access to clinical visit notes in their patient portal. The intervention framed it as “getting to see what the clinician is typing during the visit,” and a way to review information after the discussion.

Giving the care partner an identity

Many health systems (including ours) allow patients to authorize a trusted family member or friend to share access to their patient portal using their own identity credentials. However, uptake has been limited. Most patients, families, and clinicians are unaware that shared access is an available option. Some clinicians were concerned that it would increase their workload.

One care partner recalled a time he had to send a patient portal message using his wife’s account. After a recent treatment, she was experiencing debilitating side-effects and was unable to send the message herself. He logged in to her account and asked the question under her name, but this can be a problem as the healthcare team may not realize that it is not the patient who is messaging.

Therefore, “Shared Access” legitimizes the care partner’s role as a member of the care team and allows clinicians the ability to know with whom they are messaging.

Uptake of shared access to the patient portal

In our study, we found that nearly three in four patients elected to share access to their patient portal account with their care partner when offered–a marked increase from the baseline of 2%. We found that care partners often used their own new access to patient portal for viewing information, but were no more likely to send direct messages to clinicians. These findings suggest that increasing transparency did not lead to increased time demands for clinicians. In fact, it may lead to reduced questions by allowing the care partner to readily review the information themselves.

Looking forward

Consider ways to recognize and engage care partners as valuable resources and partners in care. In the long run, we expect this will help improve both quality of care and patient outcomes.