Going on Record: Patients have a right to their medical records but often don't know how to access them. Electronic systems and a concept known as open notes are changing that.

Laliberte, Richard

doi: 10.1097/01.NNN.0000511238.58187.8d
Features: Open Notes

Patients have a right to their medical records but often don't know how to access them. Electronic systems and a concept known as open notes are changing that.

WEB EXTRA For more about how to get access to your notes, visit http://bit.ly/NN-AccessNotes.

Article Outline

A small incident back in the 1970s lingered with Tom Delbanco, MD, for decades. Dr. Delbanco, now professor of medicine at Harvard Medical School and Beth Israel Deaconess Medical Center in Boston, and a young primary care physician at the time, was taking a history from a new patient. “My patient was having trouble with his marriage, difficulty at work, losing his cool with his kids, had out-of-control blood pressure—and said he drank a couple of beers a day,” Dr. Delbanco recalls.

As he pondered the red flags this combination raised, Dr. Delbanco became aware that the patient across from him, who was a printer by profession, could read what he was writing upside down, so his clinical thoughts were no longer private. “I'm trying to figure out whether I should write ‘possible alcohol abuse,’ because I think you probably drink more than a couple of beers a day,” Dr. Delbanco recalls explaining. “The patient was silent for a moment and then said, ‘You'd better write it down.’”

What transpired might seem like a minor snippet of conversation. But it ran against the norms of traditional medical practice: Doctors took notes about patients but didn't share them and certainly didn't invite patients to help write them. “That moment really struck me,” Dr. Delbanco says. “It didn't make sense to me that patients didn't see what we wrote about them.”

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A MOVEMENT IS BORN

Thirty years later, that exchange led Dr. Delbanco and colleague Jan Walker, RN, assistant professor of medicine at Harvard and Beth Israel, to co-found a movement that is changing the rules about medical records and, many experts contend, establishing a new standard of care—fully transparent clinical notes.

“The idea is simple,” says John Santa, MD, director of dissemination at OpenNotes (http://OpenNotes.org), a nonprofit organization that Dr. Delbanco and Walker established to advance the initiative. “Give patients easy—and that means electronic—access to the notes clinicians write about them. This includes not only visit summaries that contain medical facts and what the doctor wants you to do, but also what the clinician thinks, perceives, and cares about.”

A patient's right to those records was written into federal law with the 1996 Health Insurance Portability and Accountability Act (HIPAA). “But we've made it as difficult for patients as possible,” Dr. Delbanco says. Note seekers often have to wait days or weeks for a records department to fulfill a request. They may be required to pick up records in person or pay a copy fee for each page. Some are given a CD that many computers aren't equipped to play or have to read records with a clerk standing over their shoulder. “[OpenNotes] is making it easier for patients to do what they have a right to do anyway,” Dr. Delbanco explains.

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A CONCEPT THAT'S CATCHING ON

The OpenNotes movement is gaining adherents, thanks to a few recent overlapping trends that have made access to records more practical. For one, the internet can disseminate medical information to savvy patients and allows for secure portals where patients can connect with health care providers, who are increasingly adopting electronic medical record (EMR) systems.

“Once records are digital, you can provide access to them on a large scale,” says Walker, who began researching the potential impact of digital information on patient care in the early 2000s. (Patients typically access notes, test results, and other parts of their medical records on an EMR system such as Epic through a password-protected online portal. “OpenNotes is an idea, not specific software or a consulting service,” Dr. Santa says.)

Research from Dr. Delbanco, Walker, and others finds that after reading notes patients feel more engaged with their care. For example, in a 2016 study published in BMJ Open, survey responses and face-to-face interviews with patients indicated that people who read their notes felt better educated about their health and took better care of themselves. The findings built on earlier research in which open-note readers reported that they understood their doctors' advice better and were more likely to follow their medical plans by, for example, taking medications as prescribed.

But early on, Walker noted that patients and doctors weren't on the same page about open notes. “Patients loved the idea,” she says. “Clinicians were scared to death of it.”

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NOTES ARE KNOWLEDGE

After being diagnosed with a type of brain cancer called a gemisto-cytic astrocytoma following a seizure at work in 2008 when she was 29, Liz Salmi of Sacramento, CA, experienced the difference between closed and open notes firsthand. Diagnosing, treating, and managing her disease were fraught with uncertainty—how to grade the cancer's severity, whether lesions on brain scans indicated multiple sclerosis, when to have surgery, whether to get radiation in light of the long-term risks for someone so young. “There were a lot of decisions to make,” Salmi says.

She ultimately had two brain surgeries and two years of chemo-therapy. “But the worst was two years of going through seven different antiseizure medications,” she says—living with side effects, adjusting doses, delicately tapering on and off. “When my doctor mentions a drug, I want to have the exact terminology and phrasing so I can look it up and make an informed decision about whether or not to try it,” she says. None of the documents she got from her doctors provided details beyond a few data points like her blood pressure and body mass index. Salmi took her own notes to help fill in the gaps.

An active blogger about her disease at http://TheLizArmy.com, Salmi heard about open notes through a man named David whom she met through the online cancer community. “We became good friends because we had the exact same weird diagnosis,” Salmi says. One difference: David lived in Minnesota and was treated at the Mayo Clinic, which provided open notes. “I thought, ‘Wait, whoa, they write notes and have details about our conversation in a record somewhere, and I don't see that?’” Salmi says. “Here I am, this really engaged person in a community of patients, and I didn't even know that was a thing.”

David shared his notes with Salmi, emailing PDF documents with details about medications, discussions, theories, and decisions—including one to enter hospice. Salmi visited David before he died in October 2015. “I got a lot out of his notes,” Salmi says through tears. “I realize now that there's a missing piece of the patient narrative. I deserve to have that narrative, too, to understand what's going on with my care and share it if I choose.”

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BUSTING ASSUMPTIONS

When Dr. Delbanco, Walker, and colleagues conducted their first major study of the OpenNotes concept, publishing their findings in Annals of Internal Medicine in 2012, “we didn't know what would happen or if anybody would be interested, Walker says.

They invited 105 primary care physicians to participate at three major medical centers (Beth Israel Deaconess in Massachusetts, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Washington), along with 20,000 of their patients. But many doctors they asked said no. “The biggest reasons were ‘it will screw up my work flow,’ and ‘reading notes will scare the hell out of my patients,’” Dr. Delbanco says.

Doctors feared that patients given unfettered access to clinical notes would flood them with calls and emails they didn't have time for or take longer during closely scheduled exams. “These were fair concerns,” Dr. Delbanco says. Determining whether such objections actually were valid was one of the study's goals.

“We found quite resoundingly that the doctors' assumptions proved wrong,” Dr. Delbanco says. Over the course of a year, few doctors in the study reported longer visits (0 to 5 percent) or taking more time to answer questions outside of visits (0 to 8 percent). Just as significantly, few patients (1 to 8 percent) said the notes worried, confused, or offended them.

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SPARKING CONVERSATIONS

“We often sell patients short,” says Dr. Delbanco. “Doctors may say they don't want a patient with belly pain to read notes because they've written there's a 10 percent chance of cancer,” for instance, which raises the specter of a nightmare that probably won't occur. But patients scouring symptoms on the internet probably fear that prospect already. “A patient may think there's a 50 percent chance of cancer, but keeps these thoughts to him- or herself,” Dr. Delbanco says. “Often we find, patients are relieved by what they read in notes rather than frightened further.”

In neurologic or mental health cases, it's better to address sensitive or worrisome topics transparently than to avoid them out of a patronizing concern for how people will react, says Lissa Robins Kapust, LICSW, Beth Israel's social work team leader in cognitive neurology.

When first encouraged to adopt open notes, Kapust was skeptical, thinking her observations about appearance or behavior might upset patients. “But that's part of the conversation we need to have,” she says. “If you show up looking like hygiene has been compromised, I need to say, ‘Gee, it looks like your clothing is unclean and you haven't showered—what's going on?’ Maybe I'll learn you're so depressed that you didn't get out of bed for four days, or you're having problems with attention and organization and haven't paid the electric bill, so the hot water has been shut off, or you're so confused or overmedicated that you don't feel safe in the shower.” Having used open notes for about three years, “my concerns about it have evaporated,” Kapust says.

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PATIENTS LEAD THE CHARGE

Kapust's conversion from skepticism to acceptance has proved typical of clinicians. One of the most striking findings from the Annals of Internal Medicine study was this: “Not one doctor quit sharing open notes after a year,” Dr. Delbanco says. “That made a big impression on many people.”

A number of leading organizations quickly adopted the concept, including the Department of Veterans Affairs, the Mayo Clinic, and the Cleveland Clinic. After four years, 10 million patients now have access through 50 health systems in 35 states, according to OpenNotes.

Follow-up studies by the original researchers and others have confirmed the initial findings. That helps reassure health system administrators who are considering open notes, says Jonathan Bullock, program manager of Patient and Family Centered Care Programs at Kaiser Permanente Northwest, which adopted the concept in April 2014. It also lends force to pressure from a new source: patients themselves.

“Our patients and members really pushed us to embrace open notes through our Patient and Family Advisory Council,” Bullock says. “Often when I make presentations to Kaiser Permanente regions that don't have open notes, the first people who come up and talk to me are patients who say they'll talk to their health care administrators about them.”

Now health systems are starting to view the concept in a fresh way. “We've had several CEO types tell us open notes could provide a huge marketing advantage, especially if they offer it first in a competitive area,” Walker says. “Once one provider does it, it's just a matter of time before everybody else in that market does the same.”

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COLLABORATIVE NOTES

The OpenNotes concept is evolving as well. Researchers now plan to focus on a concept they call OurNotes, in which patients collaborate with doctors on what to say—or contribute their own notes. Like Dr. Delbanco and his patient with the alcohol problem, some users already are moving in that direction. “I sometimes ask patients, ‘If you were writing the note, what would you say?’” Kapust says. “It helps me tell if we're tracking the same themes.”

Visionary proponents such as Steven Keating, PhD, who was recently awarded his doctorate from the Massachusetts Institute of Technology, where he studied in the MIT Media Lab, see much more potential. Long fascinated with data, Keating often volunteered for research studies as an undergraduate, including a 2007 study in which an MRI revealed a small abnormality in his brain. He had no symptoms, so doctors didn't find it particularly alarming, and Dr. Keating thought little about it until seven years later, when he began smelling odd, inexplicable whiffs of vinegar. Realizing that the abnormality years before had been located in a region associated with the sense of smell, Dr. Keating got another MRI. It revealed a large tumor on his left frontal lobe. Brain surgery to remove it required Dr. Keating to be awake and speaking during the procedure so surgeons could tell if they were damaging the brain's language center. “My surgeon supported my gathering data and was okay with my videotaping the whole thing,” Dr. Keating says. “In trying to get follow-up data, I realized how many problems there are with access.”

Dr. Keating's requests may have gone beyond the normal patient's. He contributed his tennis-ball-sized tumor tissue to a research study and asked “for a couple of millimeters so I could do my own pathology with my own microscope,” he says. “But they have strict policies about giving anything to the patient.” He felt so frustrated that he became an MIT medical student and took a class in pathology. “Then I could apply for research use of my own tumor,” he says. “It's crazy you have to go to such lengths. You'd think patients would be first in line for their own data, but they're often last.”

That got him thinking about how patients with access to their data could drive scientific discovery. “Why can't you press a button on an iPhone app and say, ‘Donate this data to this study,’ or, ‘Make a 3D print of my skull’?” Dr. Keating asks. “If you had a simple ‘share’ button, you could have crowdsourced data sets and one of the biggest medical studies in history.” As Salmi has tweeted: “In the future, we won't ask, ‘Do you take my insurance?’ We'll ask, ‘Do you take my data?’”

For now, “it will be a battle at times, but we want 50 million patients on portals where they can access their notes by 2018,” Dr. Santa says. “People in health system leadership acknowledge that the day is coming when everything we do for patients will be available to them because the technology allows it and other industries are moving in that direction. An open, patient-centered model of care is inevitable.”

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How Open Notes Benefit Patients

Stacey Whiteman of Dedham, MA, was offered the option of participating in OpenNotes when she underwent counseling at Beth Israel Deaconess Medical Center in 2014 after being diagnosed with multiple sclerosis. “I jumped at the chance,” she says. “My condition makes it difficult to manage daily activities, and I knew this could help.” Even simple information makes a big difference, she says. “For example, open notes help me figure out where and when my next appointments are. The medical campus has different buildings, and some days I have no idea where I'm going. Now I can check my portal, Patient Site, and see.”

Research finds that up to 87 percent of people able to access open notes feel more in control of their care. Experts and patients say that using open notes also:

JOGS MEMORY. “Physicians remember 80 percent of what's important to say in a visit, and patients remember only half of that,” says John Santa, MD, of the nonprofit OpenNotes. Viewing detailed accounts reminds both of what they've discussed. “It continues the session,” Whiteman says. “Some days I immediately get distracted after leaving, and the whole session becomes a complete blur. When I get home, I can go back, read the notes, plan for next steps, and remind myself about the next appointment.”

MAKES DOCTOR VISITS MORE EFFICIENT. When both parties can review notes ahead of a visit, clinicians and patients may spend less time reviewing where they last stood. “Whatever the important threads are, we can jump back into them so the session is richer and more fruitful,” says Whiteman's social worker, Lissa Robins Kapust of Beth Israel.

HELPS CARE PARTNERS. About 20 to 40 percent of patients accessing open notes reported in the survey sharing their notes with others, which can benefit care partners. “Mom said everything is fine, but you know she's having trouble breathing, is depressed, and is not thinking straight,” says Tom Delbanco, MD, of Harvard. “It helps to know what the doctor is thinking so you can help her more.”

PROVIDES CONTEXT. Notes are also open to other health care providers on a patient's team. So after seeing a counselor about depression or anxiety, your neurologist or therapist can get a better sense of how his or her care fits into the bigger behavioral health picture.

BUILDS TRUST. Patients often trust what doctors say more when they feel everything is transparent, and doctors trust patients more to follow through. “One patient who had fired a couple of previous doctors told me, ‘I'm happy with you because you write the same things you tell me,’” says Dr. Santa, who practiced at the VA before joining OpenNotes. “He was a bit paranoid that the VA had some kind of agenda. Now he could see I wasn't hiding anything.”

CATCHES ERRORS. “We think the OpenNotes movement has enormous implications for patient safety,” Dr. Delbanco says. In a 2016 BMJ Open study, when Dr. Delbanco and colleagues interviewed 13 of 576 surveyed patients using open notes, every one of them had found mistakes in their records that they brought to providers’ attention. “Details like, ‘You said take this drug once a day, and I thought it was twice,’ could be of life-and-death significance,” Dr. Delbanco says. Insurers are now funding studies to see if open notes lead to fewer malpractice claims.

KEEPS PATIENTS HONEST. “We hear consistently from patients that notes help them feel known,” and likelier to get caught if they fudge their health history, says Jonathan Bullock of Kaiser Permanente Northwest. One patient wrote on a survey, “I told my doctor I ran every day. Now I think he knows I really don't. This may hold me more accountable.”

KEEPS DOCTORS HONEST, TOO. Notes drive reimbursement, so a doctor who writes that he spent 40 minutes on five problems will be paid more than one who spent eight minutes on one. “Doctors can exaggerate or make things up, too,” Dr. Delbanco says. “I think a quiet reason some doctors are really against open notes is because patients can now say, ‘Wait a minute…’”

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The Knack of Note-Writing

Patients want honest, transparent, and intelligible notes—and doctors are delivering.

Doctors initially worried that open notes would invite self-censorship. If patients were going to read their notes, would it change what doctors wrote? In studies, that fear has largely proven to be unfounded. “We told our physicians up front, ‘Don't water notes down,’” says Jonathan Bullock of Kaiser Permanente Northwest, “but do use them as teaching tools.’”

That often means using less jargon. “In the old days, if you had a sore throat, I might write ‘lymphadenopathy, exudate on tonsil, pyrexia 102, tender nodes, penicillin,’” says Harvard's Tom Delbanco, MD. “When writing an open note, it might be, ‘Neck sore and enlarged, see pus, has 102 fever, and having trouble swallowing, therefore bacterial infection and will give penicillin.’ That doesn't make the note dumber, it makes it easier for a patient to understand.”

Doctors may also avoid abbreviations that could be inscrutable, alarming, or potentially offensive. “Writing ‘SOB’ on a chart would mean ‘shortness of breath’ to us,” Bullock says with a smile, “but a patient might read that as something different.”

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A Case for Open Notes

A short documentary explains how sharing patient information can lead to healing.

The value of patients' personal medical information lies at the heart of a documentary film that greets visitors to the nonprofit OpenNotes website. Titled The Open Patient: Healing through sharing and produced by Red Hat Films, the 16-minute movie (http://bit.ly/OpenPatient) begins with MIT graduate Steven Keating, PhD, looking into what appears to be his own camera, hair shorn, as he prepares to undergo brain surgery the next day. “In case I change at all,” he says, “I wanted to provide my future self with my present self's thoughts.”

Understanding or developing data is part of what makes the open notes concept powerful, according to several people featured in the film, including Tom Delbanco, MD, and Jan Walker, RN, of Harvard University, and Liz Salmi of the cancer patient blog http://TheLizArmy.com. Personal medical information could be used, for example, to learn treatment options, find clinical expertise, and help others.

The film depicts how data and sharing have helped Keating and Salmi in their medical journeys and provided insights to others. In one segment, Keating presents a sped-up video that shows his entire brain surgery in one minute. But both express frustration about lack of access to their own data and lack of consistent standards for gathering and disseminating medical records to loved ones, followers, or researchers.

As Dr. Delbanco says near the end of the film, “We think full transparency is the platform for better care, for engaging patients much more actively in their care.”

© 2016 American Academy of Neurology