Communication should be a two-way street. But that is not always the case in health care — even when clinicians and patients have the best intentions.
Enter OpenNotes — an emerging movement in which patients have access to the notes that health care clinicians write about them. This groundbreaking idea was developed by Jan Walker, MBA, RN, and physician Tom Delbanco, MD, who have been working together since the 1990s on several initiatives aimed at improving patients’ health care experiences.
Health care providers and organizations increasingly offer secure, electronic portals in which patients can go online and book appointments, as well as communicate with their health care team through email. They also can get their lab values, X-ray reports and other test results.
“But [the latter] are only data points,” said Walker, a member of the research faculty of the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center (BIDMC) and Harvard Medical School in Boston, and American Nurses Association (ANA) member. “Having that data is fine. But if we expect patients to pick up the ball and be more involved in their health, they need all the information, their entire health story. And that means being able to see visit notes.”
The OpenNotes program is all about transparency, patient-centered care, meaningful communication and reduced health care errors. Walker recently spoke about the program and related research findings at an ANA meeting of its affiliated specialty nurses associations. She wants all nurses and other health care professionals to learn more about this initiative so this “open book” policy can expand throughout the nation.
“Opening visit notes really breaks down the barrier in which patients see doctors and other clinicians as having all the answers,” Walker said. “I’d really like nurses to think about patients having access to their visit notes — all their information — and personally decide that it’s a good idea, and then advocate for it wherever they are.”
How it got started
In 2010, OpenNotes was piloted with primary care physicians at three, large health care organizations: BIDMC, Geisinger Health System in Pennsylvania, and the University of Washington Harborview Medical Center in greater Seattle. Before testing it, the OpenNotes team surveyed 170 physicians about their thoughts on sharing notes, and 38,000 patients about viewing visit notes.
According to OpenNotes leaders, the survey revealed that patients, no matter their backgrounds, were interested in the idea and felt they would learn more about their conditions. Physician results were mixed; many could see the upside for patients, but they also were concerned that they would get more questions from patients than they would have time to answer, that their patients would be worried or confused by information contained in the record, and that the quality of their notes might be compromised.
After a year, the OpenNotes team surveyed 105 physicians and more than 19,000 patients who participated in the program. They found, for example, that 77 to 85 percent of patients reported understanding their health and medical conditions better by reading visit notes, and a similar percentage felt they were more in control of their health. Roughly three quarters reported taking better care of themselves as a result of having more information. And more than 20 percent reported sharing their notes with someone else, most often a family member or relative.
Physicians generally reported that their relationships with their patients were strengthened, that their workflow was not seriously affected and that opening their notes was a “good idea.”
Now the program is expanding to include more health care professionals within the initial health systems, as well as in other health care systems. At BIDMC, for example, physical and occupational therapists, orthopedists and advanced practice registered nurses (APRNs) working in outpatient settings are opening their notes to patients, according to Walker. By the end of the year, unless they obtain permission from their clinical chiefs to opt out of the program, everyone who writes outpatient notes that are part of the patient record will be sharing that information with patients. And inpatient notes will be opened in 2014.
NPs getting ready
Maura Brain, MS, GNP-BC, CDE, is a certified adult and geriatric nurse practitioner, who is also certified in diabetes care. She works in a large, academic outpatient clinic associated with BIDMC. Although she sees patients as young as 18 years old, the largest percentage of her patients fall within the 50- to 70-year-old range. And because of her specialty interests, she provides ongoing primary care to patients with diabetes and other metabolic disorders, hyperlipidemia, hypertension and obesity — all areas where patient education is key.
Brain expressed excitement about participating in the OpenNotes program this summer, and added that the initial data gathered from surveyed physicians and patients look powerful.
“Anything that improves transparency and gives more power to patients makes sense,” Brain said. “I think that we need to embrace this practice, because I believe it’s the direction that heath care is moving toward in the near future.”
She does, however, worry about some patients feeling anxious if they see some differential diagnoses that are part of her notes, especially if they are “worried-well” patients.
“But nothing that they are reading [in their health care record] should be a surprise,” Brain added. “If I’m concerned about a patient’s weight gain, for example, I will be having that crucial conversation with my patient — and capturing it in my notes.”
Open-record policy at the VA
Giving patients access to their complete health care record is part of the Veterans Affairs’ (VA) ongoing effort to promote self-care and patient-centered care, according to Tracey L. Martin, MSN, RN, the program manager of My HealtheVet for the VA New England Healthcare System, which provides comprehensive services throughout that region. My HealtheVet is the VA’s online personal health record system for veterans, active duty personnel, dependents and caregivers, and is designed to provide them with resources and tools to make informed decisions.
“We’re constantly responding to feedback from our patients, who always want more information available to them,” said Martin, a member of the Nurses Organization of Veterans Affairs, an organizational affiliate of ANA. “And the more we offer them, the happier they are.”
Currently, anyone can access the My HealtheVet website to see a range of resources, similar to what’s available at WebMD. VA patients and their families can also create a personal health record account to communicate with their health care team. And starting this past January, patients can link to selected parts (or extracts) from their computerized patient record system by upgrading to a “Premium My HealtheVet” account, which, according to Martin, “opens the world of the electronic medical record to them.”
The VA was already heading toward an open-record policy when it saw the data coming out of the OpenNotes initiative, which reinforced the agency’s own pilot test results revealing that reading notes did not distress patients. Now the VA has partnered with Walker and her team to test, improve and ideally expand the program.
“Moving forward at the VA, nothing is being held back,” Martin said. “Patients can see any new note that is written in their chart since January 2013 from any VA inpatient or outpatient visit — progress notes, mental health provider notes, nurses notes, discharge notes.”
And the VA has already seen the benefits. For example, one patient who read his discharge note discovered a discrepancy in his medication record — leading Martin to arrange a medication reconciliation meeting with a VA pharmacist.
Care coordination also is improved, because many VA patients see other providers in their communities, Martin added. So patients can have a note from a recent VA visit in their hands that they can then share with their community provider.
“And patients really engage us to clarify things, which is where patient education comes in,” she said. “They also help us ensure that their records are as up-to-date as possible, such as noting that they no longer smoke or have a particular health problem.”
Although the OpenNotes program has been generally accepted, there are still some concerns raised by health care professionals at the VA, generally around second-guessing how they should write certain notes, such as a mental health note.
But patients always have had the ability and right to request a copy of their chart or medical record, Martin pointed out.
“We should always be writing our notes as if our patients are standing over our shoulder,” she said. “But beyond that, we should be having conversations with our patients about what we are putting in our notes. That’s what leads to patient-centered care.”
Walker expressed a desire to get more nurse researchers involved in this initiative as it continues to evolve to determine what is effective and useful to patients and their family members or other care partners.
She also believes that nurses’ notes can prove exceptionally valuable to patients and their families.
“Nurses are often so in tune with their patients, so I think the notes they write would be very useful to patients’ understanding of their health issues and how to improve their health,” Walker said.
For more information about OpenNotes, which is supported by the Robert Wood Johnson Foundation, go to www.myopennotes.org.
— Susan Trossman is the senior reporter for The American Nurse.