Increasing Caregiver and Patient Engagement Through PHR Use

NCT ID: NCT03659565

Last Updated: 2024-10-03

Basic Information

• Recruitment Status: TERMINATED
• Clinical Phase: NA
• Total Enrollment: 10 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2019-04-23
• Study Completion Date: 2022-06-17

Brief Summary

Informal caregivers play an integral role in managing complex, chronic disease patients providing services equivalent to an estimated economic value of $470 billion. The inclusion of informal caregivers in the healthcare team can improve care coordination and make health care safer by reducing potential medical errors caused by miscommunication. the investigators reason that a properly designed PHR with a simplified user interface and easy access to relevant content can improve the management of chronic diseases and better integrate caregivers and patients into the healthcare team.

Detailed Description

Informal caregivers (caregivers, often family or friends) play an integral role in managing patients with complex, chronic diseases. It is estimated that caregivers provide $470 billion of uncompensated care. Despite their impact, healthcare systems largely neglect caregivers. Long distance caregivers of older adults (who make up 15% of caregivers in America) are at a particular disadvantage. In the current healthcare system, health information technology (HIT) has not been optimized to support the needs of caregivers and patients. Providing HIT that supports enhanced communication between patients, caregivers, and clinicians can improve patient safety by increasing the accuracy of patient data and by reducing miscommunication(1).

There is limited knowledge concerning best practices to promote caregivers' and patients' activation and engagement, especially with HIT. Access to personal health information through the personal health record (PHR) has the potential to improve chronic health care management, and encourage patient engagement. Although caregivers and patients express a willingness to adopt PHRs, in practice, multiple barriers hinder PHR adoption. A properly designed PHR can help caregivers and patients manage their health and become partners in the healthcare team.

This study's overall objective is to identify caregivers and cardiovascular patients' communication and technology needs and to build and test an optimized PHR design that promotes active participation of patients and their caregivers in their health. The overall hypothesis is that an optimized PHR will expand the role of caregivers to improve the patient's health and improve the satisfaction of both patients and caregivers with their care. The investigators will employ an agile, user-centered design process involving caregivers and older cardiovascular patients.

Conditions

Cardiovascular Diseases

Study Design

• Allocation Method: RANDOMIZED
• Intervention Model: PARALLEL
• Primary Study Purpose: HEALTH_SERVICES_RESEARCH
• Blinding Strategy: SINGLE

Study Groups

Enhanced Pre-Visit Consultation

Patients and caregivers will participate in an enhanced pre-visit consultation using Zoom for remote video and audio conferencing with screen sharing capabilities.

Group Type: EXPERIMENTAL

Enhanced Pre-Visit Consultation

Intervention Type: BEHAVIORAL

The Intervention Group will be given access to the optimized personal health record and will use Zoom as part of the pre-visit consultation.

Usual Care Control

Patients continue to receive usual care from their cardiologist.

Group Type: ACTIVE_COMPARATOR

Usual Care Control

Intervention Type: BEHAVIORAL

Caregivers and patients will participate in usual pre-visit process.

Interventions

Enhanced Pre-Visit Consultation

The Intervention Group will be given access to the optimized personal health record and will use Zoom as part of the pre-visit consultation.

Intervention Type: BEHAVIORAL

Usual Care Control

Caregivers and patients will participate in usual pre-visit process.

Intervention Type: BEHAVIORAL

Eligibility Criteria

Inclusion Criteria

• Eligible patients will be patients with heart disease, able read, write, and speak English, and at least 65 years of age.
• Eligible caregivers will be a primary caregiver of an eligible patient, able to read, write, and speak English, and at least 18 years of age.

Exclusion Criteria

• Individuals under the age of 19 will not be considered for participation.

• Minimum Eligible Age: 19 Years
• Maximum Eligible Age: 100 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

University of Nebraska

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Principal Investigators

Martina Clarke, PhD

Role: PRINCIPAL_INVESTIGATOR

University of Nebraska

Locations

University of Nebraska Medical Center

Omaha, Nebraska, United States

Countries

United States

Other Identifiers

0491-18-EP

Identifier Type: -

Identifier Source: org_study_id