Taking Note

Jun 12, 2012, 2:00 PM, Posted by

Suzanne Mintz, President and CEO of the National Family Caregivers Association

Nearly one third of adults in the U.S. provide care for a chronically ill, disabled or aged family member or friend during any given year, spending an average of 20 hours per week providing care for their loved one. Many are responsible for helping coordinate their loved one’s medical care—keeping track of doctor’s appointments, reminding care recipients to take medications and monitoring their overall health.

Asking patients to share doctors’ notes with their family caregivers can help caregivers be more effective in this role. It can also help both patient and caregiver feel more in control and allow them to more fully engage in health care decisions. Yet few patients act on their right to access and share their doctors’ notes, lab test results and other information contained in medical records.

Reminding women—who so often play the role of family caregiver and drive health care decisions in families—that this resource is available and encouraging them to ask doctors for copies of their notes is critical. That’s why I was so pleased to read about OpenNotes in the May issue of the magazine Redbook.

OpenNotes—a project funded by the Pioneer Portfolio—is making it easier for doctors to share their notes with patients. While the project is still in the pilot phase and final results won’t be out until later this year, the researchers already have a strong indication that patients want easy access to their doctors’ notes, and want to share those notes with others: In a survey conducted at the start of the OpenNotes project, half of patients said they anticipated sharing their notes with family, friends and other health professionals. That’s good news for the 65 million family caregivers out there.

Doctors’ notes can be a powerful tool for family caregivers, whether they are caring for a parent, spouse, child, other family member or friend. At their most basic, doctors’ notes can allow caregivers to use the information captured in the notes to make sure their loved ones take medications when they need to and follow the care plans that have been prescribed. The notes can also serve as a reminder of what was discussed in the doctor’s office and the rationale behind treatment plans.

Sharing visit notes can also help break down communication barriers and build trust among doctors, patients and their caregivers. Seeing notes could diminish misunderstandings by patients and those who care for them—as well as allowing them to correct mistakes made by doctors—and provides an opportunity for patients and caregivers to ask questions, and be more connected and engaged.

I hope more patients feel empowered to ask for copies of their doctors’ notes and give permission for their family caregivers to access them as well. Sharing doctors’ notes can engage patients and loved ones in their health care and is a simple way to make health care in America more patient- and family-centered.

Read more about OpenNotes in the Spring issue of Take Care, the newsletter of the National Family Caregivers Association.

This commentary originally appeared on the RWJF Pioneering Ideas blog.