What is the research about?

Good self-management is key to quality of life in older adults with two or more diseases. A vital skill in patient self-management is decision making, which requires enough and appropriate information. The most important source of information to help with self-management comes from their primary care doctor, typically during the primary care visit. Yet up to 80% of information from doctor visits is forgotten, which can lead to poor self-management and low quality of life. Similarly, caregivers (family or friends who help older adults with their care) need information to be effective; insufficient information leaves them feeling unprepared, which can be stressful.

Since April 2021, mandated through the 21 Century CURES Act, healthcare providers are required to provide patients direct access to visit notes using their online patient portal. While access to notes can help with recall and self-management and lead to better health outcomes, many patients report that the notes do not capture what was discussed and are often difficult to understand. An alternative approach is to give patients an audio-recording of their visit. Research finds that patients who get visit audio recordings can better remember and understand their visit information. They find it easier to follow their doctors’ advice leading to better quality of life, and their caregivers also feel more confident in caring for the patient.

It is unclear to older adults and health care decision makers what is the best way to for patients to receive visit information.

Who can this research help?

Patients, caregivers, and hospital and health insurance administrators can use this project’s findings to learn about the best way to help older adults receive their visit information.

What is the research team doing?

The research team is working with primary care clinics at three health systems across the country to enroll 900 adults ages 65 and older who are managing diabetes or high blood pressure, plus one other disease. The team will also invite caregivers identified by patients to join the project. The project team expects to enroll 300 caregivers in the study. The team will assign patients to one of two groups based on chance. Each group has equal numbers of patients. Patients and caregivers in one group will get access to their visit notes through the patient portal. The research team will give them guidance on how to find and use their visit notes. Patients and caregivers in the other group will not only have access to their visit notes but also get access to audio recordings of their visits. After each visit, patients in both groups will receive emails to review their visit information: two days after their visit to remind them of their visit discussion and any tasks they may have, and three days before their next visit, they will be asked to think of any changes from their last visit and to make a list of three things they want to talk to their doctor about. The team is comparing changes reported by patients over six months in quality of life, satisfaction, self-management ability, medication adherence, visit communication, quality of care, and healthcare use. Caregivers will report on changes in how prepared they feel to provide care, burden related to caregiving, and how much they felt part of the patient’s visit conversation. The project team will also interview patients, caregivers, doctors, and healthcare leaders to develop a plan to use these findings beyond this research.

Patient and Stakeholder Engagement Plan: The team includes seven older adult patient partners (including caregivers and patients), clinician partners, and stakeholders (healthcare decision makers, ethicists, national and local advocacy groups, and payers) from across the country. Inclusion of patient partners and stakeholders in the planning and implementation of this project has been, and will continue to be, critical for its success.

Project Collaborators: Dartmouth College will be collaborating with Dartmouth Health (Manchester, New Hampshire), Vanderbilt University Medical Center (Nashville, Tennessee), the University of Texas Medical Branch (Galveston, Texas), and Beth Israel Deaconess Medical Center (Boston, Massachusetts).