Patients across California now have easier access to their medication lists, lab results, upcoming appointments and messaging through secure online systems. But one key aspect of the medical record is not typically available online: the candid notes a physician writes about you during and after an appointment.
Those notes are part of a patient’s medical record and include anything from descriptions of a patient’s demeanor to diagnosis and treatment plans. Doctors’ notes are legally available to patients, though the time and photocopying involved in retrieving them can be cumbersome.
As electronic medical records become more widespread, a movement to grant patients more immediate online access to those notes is gaining momentum nationwide. Numerous health systems across the country are testing the concept, despite hesitation from some caregivers who fear full online transparency might leave patients unnecessarily worried or confused.
Advocates, including those who participated in pilot “OpenNotes” studies, insist more information engages patients, encourages communication and levels the patient/physician relationship.
“In the end, I think it would build trust,” said Marvin Campos, a family medicine physician with Kaiser Permanente in Central California. “If it’s used well, it will be a non-event. People will wonder why we didn’t do this before.”
Kaiser in California hasn’t opened up those notes in its patient portals yet, though they’re considering it, Campos said. In the Pacific Northwest, however, Kaiser Permanente Northwest is part of a consortium that’s implementing OpenNotes along with several other health systems. Last year, the Department of Veterans Affairs signed on. Other pockets throughout the country, such as hospitals in Boston, Seattle and rural Pennsylvania also have piloted full transparency to rave reviews.
Patients in the pilot study reported they felt more in control of their care and had a better understanding of their medical conditions and care plan. As a result, they also were more likely to take their medications as prescribed.
“When we think about trust in health care, it’s patients trusting their doctor,” said Melissa Anselmo, the national program director for OpenNotes, a national initiative that has received support from the Robert Wood Johnson Foundation. “But we also need clinicians to trust patients, that they can handle this.”
Movement Gains Steam
The push for opening up notes isn’t a new one, but the widespread movement to electronic medical records is helping it gain steam.
OpenNotes advocates say it’s time. They point to results from a 2010 study in which 105 doctors shared their notes with 19,000 patients in Boston, rural Pennsylvania and Seattle. By the end of that pilot program, 99 percent of the patients surveyed said they wanted continued access to physician notes, and no doctor asked for the notes to be turned off, according to results published in the Annals of Internal Medicine.
The vast majority of patients reported the notes made them feel more in control of their care. A small percentage said they caused confusion, worry or offense. While a sizable minority of doctors said they changed the way they recorded sensitive topics such as substance abuse, mental health or obesity, the overall consensus was that the change had “no more than a modest effect on their work lives.”
Other studies have also found that improved communication with one’s physician leads to better overall health outcomes as well as greater levels of satisfaction with care. Putting more information in patients’ hands empowers them, enhances their knowledge and helps them feel more in control of their health decisions.
Changing the Dialogue
More immediate access could change the health care conversation, making the patient a more active participant in a dialogue with their physician. That’s something Campos, the Kaiser physician, says he already strives for – even though his patient portal doesn’t include those notes now.
Campos turns the computer toward patients so that they can see exactly what’s in their chart as he types. For one, it improves accuracy since they can let him know immediately if he misunderstood something.
“I might have typed left shoulder even though they pointed to their right,” he said.
With full online transparency, he’d probably have to explain some terminology, though he foresees a future where one could click through to an online glossary that would explain medical jargon in a more user-friendly way.
Including notes in a portal may result in more concise and standardized note taking, said San Francisco physician Lawrence Shore. He’s noticed that some doctors write notes that read as a replica of their diagnostic thought processes. Others spell out impressions that are probably better left in one’s head.
“You can’t say an unpleasant person came in and whined,” he said. “You can think it but you shouldn’t write it.”
On the patient side, there’s a lot of enthusiasm for more transparency. Patients said it could improve their relationship with their clinician, making it more of an exchange and less of a one-way delivery.
One of those is Bay Area resident Lindsay Tonderys, who says she got used to more transparency with her dentist. There, she could see everything from commentaries on how her gums handled flossing to personal notes on her wedding and daughters’ births. Tonderys said she was impressed with the level of detail and appreciated the sense that she and her caregiver were working together.
Challenges to Full Transparency
While there are clearly benefits to increased collaboration, physicians interviewed for this series said full transparency could have limitations.
Doctors may want to document suspicions that a patient is a drug seeker so that future providers will see the red flag. Others worry that patients will misinterpret medical jargon, or get offended with terms like “morbid obesity.”
And there’s also a fear that doctors might not be as honest when they know patients will likely be reading their notes.
“We want to make sure all patients have a diagnosis that accurately reflects how sick they are,” said Douglas Hoffman, a Bakersfield physician. “When you look back at your own note, you want to recapture your thought process. You want other doctors to be able to, too.
One of the biggest questions facing the full transparency movement is how to write notes when dealing with sensitive issues such as mental health. Patients with mental health issues might react strongly to a doctor’s written assessment of their condition.
One system in Boston is taking on that challenge. Earlier this year, Beth Israel Deaconess Medical Center began sharing their mental health notes with hundreds of patients.
“Bringing transparency into mental health feels like entering a minefield, triggering clinicians’ worst fears about sharing notes with patients,” according to an opinion piece published in the Journal of the American Medical Association by psychiatrist Michael Kahn and three colleagues.
But opening up the notes helps address patients’ mental health issues more actively and could help reduce the stigma associated with them, the authors wrote. And it forces clinicians to describe behaviors rather than label them, which can help humanize notes and patients.
Taking the Leap
Health care consultant Michelle Holmes of ECG Management Consultants predicts full transparency will pick up momentum nationwide, especially as more pilot programs publish their findings. As the initiatives grow, they’re also covering more patient diversity, giving providers more confidence that the move would work with their distinct populations.
Those trial runs are exactly what convinced Brent Steineckert that his San Diego group Sharp HealthCare will likely follow suit. A new portal that they’ll roll out this year has the capability for revealing doctor notes, but the group is still not sure exactly when they’ll launch that aspect.
“We know we’ll be there soon, but we just don’t want to turn everything on and overwhelm patients/providers with too much change at once,” said Steineckert, who directs electronic health records for the group.
Steineckert said he reviewed clinical outcomes for some of the pilot studies and even reached out to the Cleveland Clinic, which added the additional transparency last year.
He learned that some training on sensitivity in note taking could be helpful. But even leaving in potentially offensive medical terms like “morbidly obese” didn’t pose the problem clinicians had feared.
“The lesson learned is that patients are smart, and they’re going to be a partner in their care,” he said. “That’s what I love about it.”