OpenNotes and The Roger C. Lipitz Center for Integrated Health Care at the Johns Hopkins Bloomberg School of Public Health have launched the Coalition for Care Partners to strengthen healthcare’s capacity to systematically identify, engage and support care partners effectively through existing patient portals. 


Care partners often take the reins of patient medical journeys, organizing medical appointments, refilling prescriptions and encouraging doctors’ orders, but they don’t always have their eyes on clinical notes. That can leave this critical patient support a little in the dark as they do their best to care for others’ health. 

The OpenNotes-led coalition wants to change that. 

The no-holds-barred patient-engagement tool and concept that launched in 2010 with a grant from the Robert Wood Johnson Foundation proved to be an effective means for patients to catch medication errors, better remember next steps, and improve plan adherence, enhance error reporting, improve coordination of care for vulnerable patients with many providers and appointments, and reduce diagnostic delay. 

Its reach across the healthcare patient engagement is already expansive, despite concerns that physicians will self-edit to help from upsetting patients. 

According to the Coalition for Care Partners announcement, a growing body of research published by the Lipitz Center and partner researchers finds that working with and providing resources for care partners also has a profound effect on the quality of care and uptake in using healthcare services. 

However, resources for care partners are not often supported in care delivery.

“Very few care partners report being asked by clinicians and other healthcare workers about their need for help in managing the care,” said Dr. Cait DesRoches, executive director of OpenNotes and an associate professor of medicine at Harvard Medical School.

According to the accompanying Summer 2022 issue brief by the Lipitz Center and OpenNotes, a recent large survey of patients who read their visit notes found that almost 40% of patients said that they shared these notes with someone other than their hospital care team. 

The researchers also found that sharing notes are as advantageous for care partners as they are for patients – with high usage metrics, like 88% of patients and 86% of care partners reporting they were able to prepare better questions for care teams, revealed.

Three health systems are studying the reasons patients choose to share notes, how they and their care partners benefit from shared access and what some of their concerns might be.

​​A coalition project in partnership with Beth Israel Deaconess Medical Center project across three hospitals employs low-cost, light-touch interventions, like posters and brochures, designed to increase the number of care partners with shared access to patient portals. The study examines how to best increase the use of shared electronic health record access by family caregivers of older adults in order to evaluate best practices to promote national adoption. 

Through a three-year, multisite project at ARCHANGELS, the coalition aims to identify care partners in clinical settings, evaluate their levels of stress, and offer resources to decrease stress and improve outcomes.

And a new five-year National Institute on Aging-funded Leadership Award project with the Center for Home Care Policy & Research seeks to better understand and address the needs of care partners of persons living with dementia. 

The coalition and demonstration projects currently have support from The John A. Hartford Foundation, the Ralph C. Wilson Foundation, Cambia Health Foundation and the National Institute on Aging. 


OpenNotes expanded broadly since its launch in 2010 as a small pilot project at Beth Israel Deaconess Medical Center, Geisinger and Harborview Medical Center in Seattle and drove a paradigm shift in openly sharing clinical notes with patients. 

In the two years from 2013 to 2015, the number of patients accessing their notes via secure patient portals jumped from 20,000 to more than 4.5 million. By 2019, 40 million patients were accessing their notes, reporting that they were more likely to adhere to treatment programs.  

Dr. Tom Delbanco, professor at Harvard Medical School, former chief of general medicine at Beth Israel Deaconess Medical Center and co-director of the OpenNotes project, told Healthcare IT News in 2015 that OpenNotes became a movement because the concept was simple and resonated across the three very different test hospitals and health systems.

“The intervention was very simple: After the doctor signed his or her note, the patient automatically got an email saying, ‘Tom just signed his note; Mike, you’re welcome to read it.’ And then, two weeks before your appointment with your primary care doctor, you got a reminder email saying, ‘You might want to review your notes,'” Delbanco said.

But the role of care partners’ abilities to access patient health information platforms is largely undefined. 

Some patients simply share their patient portal log-ins with care partners, while some health systems have been allowing patients to grant a care partner a secure login to access and act on their health information to give them the abilities to schedule appointments, refill prescriptions, review notes or send questions to providers, according to the just-released Coalition for Care Partners issue brief

This effort is more of a challenge because, unlike the launch of OpenNotes, the findings are not the same across the coalition’s test health system. 

According to the issue brief, “The Lipitz Center found that implementing shared access is variable across healthcare organizations, and uptake by patients is limited. In one study, nearly half of hospital-based personnel recommended that patients share their login/password with a care partner rather than seek shared access.”  

There were other issues with shared access to physician notes. According to the brief, “Sharing identity credentials poses risks of confusion and mistakes; for example, when clinicians do not know with whom they are interacting, or when legal documents that were submitted through the patient portal by someone other than the patient must be retracted.” 


“At a most basic level, healthcare workers should be asking care partners about their capacity and knowledge – this information is necessary and appropriate when the care partner is essential to coordinating or enacting a patient’s care plan,” said Dr. Jennifer Wolff, professor in the Department of Health Policy and Management at the JHU Bloomberg School of Public Health and the director of the Lipitz Center.

Andrea Fox is senior editor of Healthcare IT News.


Healthcare IT News is a HIMSS publication.