Published in the January 2014 issue of Today’s Hospitalist
SOMETIME THIS YEAR, when hospitalist Henry J. Feldman, MD, rounds on his patients at Boston’s Beth Israel Deaconess Medical Center, he can expect to find them lying in their hospital beds with laptops, looking over his notes on their hospital stay, even as he sits down to discuss those notes with them.
“Are my patients going to be unhappy with what I wrote? Is it going to create lots of extra work for me? Is this going to force me to change how I write notes?” Dr. Feldman asks.
Physicians definitely have concerns about giving patients online, real-time access to their own electronic medical records. The good news, says Dr. Feldman, is that researchers have already studied the impact of bringing sunshine to the conventionally guarded inner workings of health care as part of OpenNotes, a multi-year, multicenter national study.
While that study looked only at progress notes written by outpatient clinicians, transparency proved to be much less disruptive than many physicians feared. Doctors found that their volume of calls didn’t shoot up and that patients weren’t confused by what they read. And while 30% of the doctors in the study did report changing the content of their notes because patients were going to read them, that wasn’t necessarily a negative.
“I’m not convinced that spending a few extra seconds thinking about what you put in your note is a bad thing,” Dr. Feldman says. Very few clinicians would argue that their medical notes are as clear and precise as they could be, whether the audience for them is other clinicians or patients.
Word of that outpatient success has now reached hospitals. An article in the July 2013 issue of the Journal of Hospital Medicine, for instance, spelled out the opportunities and challenges for hospitalists trying to use open notes as a tool to reduce medical errors and improve care coordination, discharge transitions and overall quality. The article, authored by Dr. Feldman and his Beth Israel Deaconess colleagues, concluded that giving patients access to their full record is on its way to becoming “the standard of care in hospital medicine.”
Already, all patients in the VA system have online access to their hospital’s EMR. The same is true at Houston’s MD Anderson Cancer Center, while other facilities, including Beth Israel Deaconess and Cleveland Clinic, are planning rollouts this year. Other health systems around the country are exploring the expanded use of their patient Web portals, which are now mostly used to access only labs, X-rays and medication lists and to communicate with outpatient offices.
In part, the federal government’s “meaningful use” regulations for electronic health records, which focus on encouraging “increased family and patient engagement,” are behind the new push to share.
But another big driver is consumerism, explains William Morris, MD, a hospitalist and associate chief medical information officer at Cleveland Clinic. “You probably wouldn’t deposit your money in a bank that didn’t have online banking,” Dr. Morris says. “I think we are going to get to a time where patients are going to expect online access to their own electronic record.”
An idea whose time has come?
Patients have the right under the federal Health Insurance Portability and Accountability Act (HIPAA) to access their entire medical chart, including clinicians’ progress notes. But most hospitals and practices view that requirement as a burden and have set up time, cost and logistical barriers to prevent patients from seeing and obtaining copies of their own records.
The idea of open notes is to make this a much easier process. Health systems put patient records online through a secure Web portal as soon as notes are signed and posted to an EHR.
Systems have generally started in the ambulatory setting. The next step “expanding access to the inpatient setting “is turning out to be neither inevitable nor seamless.
“The speed and dynamics of inpatient care “where providers and consultants can change daily “raise a number of new concerns,” says Jonathan Darer, MD, an internist and chief innovation officer at Pennsylvania’s Geisinger Health System, which participated in the OpenNotes trial.
For one, doctors write many more notes during a hospital stay. And many more of those notes reflect conflicting opinions among providers or changing situations in a “compressed time frame.”
Then there’s the worry that not all patients may understand that differential process “and may bombard physicians with questions about things they don’t understand. Hospital stays also generally feature less time for doctor-patient conversations about preferences and goals, discussions that aid patient comprehension.
Higher stakes in the hospital
Moreover, Dr. Darer adds, “the level of acuity is higher as is the likelihood of iatrogenic harm “and ultimately, some patients die in the hospital.” Taken together, the concerns raise the stakes for providers worried that patients may misinterpret what they are reading, slow down decision-making, unnecessarily question care already underway or be more likely to sue their physicians.
“We want to make sure that if we expose patients and families to this kind of information, that it is a good thing for them and it doesn’t lead to increased worry and confusion,” Dr. Darer says. At the same time, he predicts that the experience will convince the medical community that this new transparency will not result in more work or greater liability.
“Many doctors feel that by letting patients see physician notes, they are putting themselves at risk,” he adds. “But so far, we’ve found that it tends to lower patients’ anxiety. Patients feel that things aren’t hidden from them. They are more likely to trust us and less likely to make a fuss over perceived issues with care.”
But because of concerns, Geisinger has decided to go slow and carefully study its rollout. Currently, Dr. Darer says, about 70% of Geisinger’s 900 providers are participating in ambulatory OpenNotes. “Once people have broad experience with sharing notes in the outpatient setting, I think that will pave the way to begin to have thoughtful conversations about the inpatient setting.”
Complicating the real-time release of inpatient progress notes are some unique logistical concerns. An example: How do you verify that patients are who they say they are if they are not already registered in the health system’s patient portal?
Or how do you negotiate with a wife who wants access to her husband’s records when he is unconscious and can’t give his permission? Or what should be the process for patients to correct mistakes they find in the chart?
At Cleveland Clinic, Dr. Morris explains that another big operational debate is when inpatient records should be available online. Currently, patients can access lab results online “but only after two business days. The delay is intended to give clinicians time to review and reflect on results and to reach out to patients for a discussion. Should clinician notes have a similar embargo and if so, what’s the right amount of time?
“I don’t know,” says Sue Woods, MD, a primary care internist and researcher at the Portland VA Medical Center in Portland, Ore., and a champion of the VA policy that has offered patients access to both outpatient and inpatient notes since January 2013. Since the VA implemented its policy, Dr. Woods points out, the VA has reduced the time between when inpatient notes and discharge summaries are signed and when they become available to patients online from seven to three days.
“It’s a compromise,” she explains. “Patient advocates want real-time access, while some clinicians have concerns about releasing these notes at all. We don’t yet have a lot of knowledge about how this affects the inpatient setting.”
The merits of transparency?
Having an embargo might address some doctor-patient communication concerns. But it may also limit one of the strongest arguments for real-time patient access: its use as a patient safety tool.
Thomas W. Feeley, MD, an anesthesiologist and head of MD Anderson’s Institute for Cancer Care Innovation in Houston, explains. “When patients go from consultant to consultant, sometimes the only person who is reading all the different notes may be the patient,” he points out. “When patients are engaged, they are going to be on the lookout for things,” including dropped balls.
At Beth Israel Deaconess, the administration has decided to make inpatient records, including notes, available to patients through the health system’s Web patient portal this year. (The portal already contains nearly all outpatient notes.) But details of that rollout have yet to be worked out, explains Jan Walker, RN, MBA, a member of the research faculty of the division of general medicine and primary care at Beth Israel Deaconess and Harvard Medical School and co-director of OpenNotes.
And just like on the outpatient side, physicians may want to block patient access to specific notes if they think transparency could be harmful or not useful. At the Cleveland Clinic, for instance, where a similar endeavor is underway, adolescents age 13-17 are excluded as a group. In other places, psychotherapy notes remain out of bounds. But there are other questions: Should there be an embargo for some or all notes? And should sites embed a medical dictionary to help patient comprehension, or should patients be trusted to look up terms they don’t understand and call providers for clarification?
And will all that, in turn, prove burdensome to already overworked physicians? “Part of the difference with inpatient notes is the pace,” Ms. Walker says. On the outpatient side, “you have a doctor’s appointment and then you don’t see the doctor again for weeks or months or even a year, and you have a lot of time to digest the information. But in the hospital, things happen quickly. And there are so many people involved in care. Anybody who writes a note “the physical therapist, the nurse, the pharmacist, the consultants, the hospitalist “it is in there.”
Then again, says Dr. Feldman, open notes may well prove to be a time-saver for physicians.
“Patients could use open notes to answer questions from relatives who show up after a family meeting or late in the day on what the plan is and what specialists thought,” he notes. “That would actually save hospitalists’ time.”
Picking and choosing
Another concern is that patients won’t understand SOAP-form notes or why the notes look and sound as they do. If providers feel they have to change how they write their notes to reflect patient health literacy, could that harm the necessary precision of doctor-to-doctor communication? Will patients be upset when they read “SOB” in their chart, for instance, or will they be savvy enough to understand that the medical abbreviation means something other than the common colloquialism?
In reality, says Dr. Feeley at MD Anderson, where patients have had online access to their entire patient chart since 2009, the concern that doctors will have to change what they write is more theoretical than real. Giving patients easy access to notes hasn’t translated into significant behavior changes on the part of providers.
Moreover, he adds, it probably would be a good thing for health care quality if note-writing was improved. “I don’t think our notes are the best communication tools to other providers, let alone to patients,” Dr. Feeley says.
It may be that instant access to all notes isn’t the only way to improve transparency, safety and quality. For example, the team at Cleveland Clinic working on that system’s “MyChart” interactive health record is deciding whether easy online access to a few key documents may be more useful for patients than access to everything in the chart.
“The input we received from our advisory group was that maybe progress note after progress note might be too much for patients to take in,” explains Lori Posk, MD, an internist and medical director of MyChart. “So we decided not to go with every progress note.” As of last November, only ambulatory progress notes are online, although the system plans to go live with inpatient notes this year.
There has been “a lot of apprehension,” admits Cleveland Clinic’s Dr. Morris, “but I think that once we start doing it, a lot of that will be allayed.” Physicians are worried, for instance, about having to field a lot of patient phone calls. “That could happen, but that also is a good thing. An engaged patient is the best kind of patient we can have.”
And transparency is “not a curse,” adds Geisingers Dr. Darer. “Every time we have allowed patients to partici- pate in their care in meaningful ways, we learn the exact opposite of what our fears were.” Patients end up being, he says, “more accepting. Their number of questions goes down. They are less anxious, and they feel more included.”
Deborah Gesensway is a freelance writer who covers U.S. health care from Toronto.
Starting a dialogue
DURING HIS FIVE YEARS AS A HOSPITALIST, the one aspect of hospital medicine that David Puzycki, MD, found most frustrating was the lack of time he had to talk with and listen to patients and families. Dr. Puzycki had left a solo internal medicine practice to become a hospitalist at Lakeland Regional Medical Center in St. Joseph, Mich. In November, he flipped back again, leaving that position to return to primary care internal medicine.
But when he was a hospitalist, he had an idea: Why not create a summary of all the day’s hospital notes “not only his own, but those from consultants, therapists and nurses as well “that could be cut and pasted from the electronic medical record? He could then print it out and give it to patients at the end of the day, telling them to read over the notes, share them with family members, and jot down any comments or questions they had. Patients would then share those questions with him the next morning.
It was a lot of work, and something he did on his own, independent of the group he was practicing in. But Dr. Puzycki distributed just such a document to patients and colleagues for much of last year.
“I used this as a tool to communicate to my patients,” he says. “I told them that I wanted them to read the notes, and if they didn’t understand a term, to ask me or their nurse.” In his notes, Dr. Puzycki says that he used medical terms. “I would tell them that I want to catch as many of the nuances of your case. Please tell me more.”
Sometimes, he would say to patients, “Please review the note, and if you see something you have concerns about, let us know. It was a nice way to say, ‘Did we make a mistake?’ ”
He ended up being “surprised by how much error there is in a note. “People like the fact that I really want to get it right. That’s been my experience.”
While Dr. Puzycki says many of his colleagues disliked his system “especially his reworking of the traditional SOAP note form they were used to “his patients “universally told me they loved it.” This was true, he says, even though only a minority of patients wrote down notes, questions or corrections.
“It opened up a dialogue,” he says, “And because you are opening up a dialogue, you are increasing patient understanding and satisfaction. I believe that if you engage patients in their care, they will find the care more satisfactory.”