Exemplar Technology: PHRs and Portals for Caregivers

Health information management is another caregiver task receiving increasing attention in consumer health informatics. Holden et al. (2018) write that this activity involves acquisition and integration, maintenance and update, and finally sharing and communication of the patient’s health information - all processes with implications for design of technology tools supporting the caregiver.

While informaticists are beginning to focus on caregivers’ information needs when it comes to patients’ information access, systems that actually allow such access are rare. For the most part, these are pediatric systems that allow access by patients and their parents or guardians. When it comes to PHRs and patient portals, it is unsurprising that pediatric tools constitute the cutting edge for caregiver engagement. For example, in 2014, Children’s Healthcare of Atlanta (CHOA) released a patient portal product (MyChart; Epic Systems, Verona, Wisconsin; for more on patient portals, see Part II, Chapter 1) that supports separate accounts for teen patients and parents. While both parties access using the same interface, a parent’s account can be connected to more than one child’s. For patients between ages 13 and 18, mutual permissions are necessary for access. Once the patient turns 18, she needs to authorize parental access (Alshoumr et al., 2019).

A patient-centered toolkit (PCKT) developed at the Brigham and Women’s Hospital is a tailored decision-support and education patient portal that targets caregivers of adult patients, as much as the patients themselves (Dalal et al., 2016). The tool explicitly includes caregivers as one of its target audiences because it is designed for the inpatient acute care setting, for example, for people at the bedside of ICU patients. As ICU patients may be very ill or incapacitated, caregivers’ participation is crucial. PCKT enabled patients and caregivers view their care plan information, set recovery goals and priorities, access educational materials, review their health care team members, and communicate with providers via messages. The tool involved secure login access and did not differentiate between patient and caregiver interfaces. A study of the tool suggests that participants saw the tool as useful and easy to use. Yet, this tool is still rather far from the ideal that supports inpatient to outpatient care transition and coordination of caregiving.

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