Care Partners

Are You a Care Partner?

Navigating the health care system can be challenging. Family and friends often play a vital role as caregivers or care partners who help “interpret” the experience of health care, advocating for patients and assisting them in managing their health and illness. Care partners often organize medical appointments and tasks. They can improve communication between the patient and the care team. And they themselves can experience considerable stress.

The need for doctors, nurses and others to engage more effectively with care partners has been described in the New York Times, by the AARP, the National Academies of Sciences, Engineering and Medicine (NASEM) report, Families Caring for an Aging American, and this recent Issue Brief by the Roger C. Lipitz Center for Integrated Health Care and OpenNotes.

Online patient portals with open notes can help patients and their care partners access their health information and participate more actively in care. In a recent large survey of patients who read their notes, almost 40% said that they shared their notes with someone other than their hospital care team. And studies are also examining the reasons patients choose to share notes and how they and their care partners benefit from this shared access.

Study Highlights:

• Patients of all ages chose to share access to their patient portal account.
• 42% say they share access because their care partner helps them manage health care activities.
• 30% say they share access with a care partner in case of emergency.
• 18% say they share access because they themselves do not use a computer.

How Do Open Notes Help Care Partners?

The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule gives patients the right to access their own medical records and permits sharing this health information with involved family members, friends, or professional caregivers. Open notes make that process easier and more efficient.

Notes are the part of the medical record that includes a summary of the conversations that happen at medical visits. They may include a description of symptoms, a list of medications and dosages, an overview of the treatment plan, and goals for next steps. Recent research found that the benefits of note sharing are as powerful for care partners as they are for the patients themselves.

Study highlights:

• 88% of patients, and 86% of care partners said they were able to prepare better questions for the doctor.
• 86% of patients, and 82% of care partners reported they had more productive discussions about the patient’s care.
• 85% of patients, and 79% of care partners stated they were more likely to agree about the patient’s treatment plan.
• 94% of patients and their care partners said they had greater understanding of patient health conditions, better remembered the patient’s care plan, and felt more in control.
• In addition:
• Many patients and care partners reported that medications were more often taken as prescribed.
• A third of care partners accessed notes because they weren’t able to attend an appointment.
• Only 1 in 10 patients voiced concerns about privacy.

Care partners reading open notes. With timely access to information about patients’ health and treatments, families and care partners can better support patients in managing their health and illness, and coordinating their care.

Helping care partners and patients navigate the health system. Managing health care demands can be difficult, particularly for individuals with complex health needs who are often under the care of multiple health care professionals. Providing access to notes can help ensure that everyone on the care team, including the care partner, is on the same page.

Enhancing patient safety. Sharing notes with care partners may help them understand the patient’s medical condition and be better prepared to join in managing care. Having care partners review the record also provides the opportunity to alert the health care team to inaccuracies or information missing from the patient’s health record. These benefits may be particularly important when family members live at a distance and cannot be present during face-to-face encounters.

Help for English learners and patients without computers. Although there are many benefits from having easy access to information on patient portals, not everyone has a computer, and not everyone who has a computer knows how to access and use their medical record. By providing computer access or reading and explaining medical information that is not written in the patient’s native language, care partners can help patients participate more actively in their own care.