Online access to medical notes empowers patients and may improve health
Mention to a group of physicians that patients should have ready access to their medical notes, and you will likely hear a gasp (or two). Physicians have traditionally resisted the idea of sharing medical notes with patients, but as patients clamor to be in control of their own health and payers are demanding that physicians and hospitals provide high-quality care for less money, it's an idea worth considering.
Giving patients online access to their medical records, including their doctors' notes, empowers them to take control of their own health, possibly resulting in better compliance with treatment plans and maybe even better outcomes, says Jan Walker, RN, MBA, instructor of medicine at Harvard Medical School and researcher in the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center (BIDMC), a manager of the OpenNotes project.
OpenNotes is a 12-month project that took place at BIDMC, an urban academic medical center in Boston; Geisinger Health System (GHS), a rural integrated health system with multiple medical centers and office practices in Pennsylvania; and Harborview Medical Center (HMC), a safety net hospital in Seattle.
When the project was in its infancy, some physicians were enthusiastic and optimistic, while others were skeptical. Would patients even be interested in reading their notes? Would physicians be flooded with emails and phone calls from patients asking for clarification? Would elderly patients be able to use the notes effectively? Would physicians have to change the way they write their notes? Would it be costly to implement?
Over the course of 12 months, participating physicians put the idea of allowing patients access to doctors' notes to the test, and although Walker and her research colleagues are still examining data, preliminary and anecdotal results suggest that the project was a hit.
How it works
For a hospital to enable patients to view their medical records online, it must have a secure Web portal, says Walker. BIDMC and GHS already allowed patients to access parts of their medical records online, such as lab and diagnostic radiology results, so allowing them to view doctors' notes wasn't complicated. HMC implemented a new patient portal for the project.
Walker explains that when a doctor electronically signs a patient's medical record after a visit, the action immediately triggers a secure email alerting the patient that the medical notes are ready to be reviewed.
Throughout the three sites, 114 primary care doctors volunteered to participate, and their patients who were already using the portal were automatically enrolled. Patients didn't have to consent to the project because they already had access to their medical records through the federal HIPAA laws-although the process for obtaining that access is usually cumbersome. Patients must request their records, may have to wait several days or weeks, and sometimes must pay money. The OpenNotes project makes accessing doctors' notes easy and free for patients.
Although the 12-month period is over, BIDMC and GHS continue to use OpenNotes; HMC ended the study as planned but immediately invited patients to register again for continued access.
Pre-launch survey results are a mixed bag
Before launching OpenNotes, BIDMC surveyed physicians and patients to assess their interest and concerns regarding the project. In general, physicians had more concerns than patients.
Physicians' concerns fell into three primary areas:
- Patient well-being. Physicians worried that patients would be unnecessarily worried or confused about something the physician wrote in the medical notes.
- Increased workload. Physicians worried that they would be swamped with phone calls and emails from patients asking for further clarification and that their office visits would take longer because they would need to explain how to use OpenNotes.
- Content. Some physicians worried that they would have to change the way they wrote their notes, including their use of acronyms and medical jargon. They were especially worried about how they would phrase concerns regarding mental health issues, substance abuse, obesity, and cancer.
Patients, however, were eager to jump right in. In fact, out of the 37,856 patients who completed the survey, fewer than 15% thought they would be worried about something they read in the medical notes. Of the patients who responded to the survey:
- 90% thought that OpenNotes was a great idea
- More than 50% thought that if they could read their medical notes, they would do a better job taking their medications
- About 90% thought they would feel more in control of their health
- About 75% thought they could take better care of themselves
- About 25% thought they would download the medical notes and share them with someone, such as a spouse or another physician involved in their care
The OpenNotes project coordinators postulated that only young, tech-savvy, well-educated patients would be interested in the project, but Walker was pleasantly surprised to be wrong. "Everyone across the board was interested in it," she says.
Even individuals without computers were interested in seeing their notes. "About half of the patients at Harborview have computers; many don't have homes. Even people without computers have email addresses and find ways," Walker says.
The proof is in the pudding
Despite her initial concerns about the OpenNotes project, Diane Brockmeyer, MD, a primary care physician at BIDMC, found it helpful.
"I was a reluctant volunteer. I was worried about how it would impact my work flow. I thought it would be a good thing for patients, but I thought it would take me longer to dictate, that patients would call me all the time. I have to say I'm glad that I did it because it is easier than I imagined and it has been a big benefit for my patients," she says.
Brockmeyer explains that physicians' three major concerns, although valid, didn't come to pass. With regard to physicians' concern that patients might be worried about something they read in the medical notes, she says it is rare.
"Over the course of a year and a half using OpenNotes, I've had five comments about the substance of my notes. I thought there would be that many per week," Brockmeyer says.
Instead of worrying about something they've read in their medical notes, patients are more likely to take an active role in the content of the notes, thus reducing their worry. "I've had a couple of patients tell me that I have a piece of information wrong and to correct it-some aspect of their history that I misheard. That is part of the reason patients should read their notes; we don't always get things right," says Brockmeyer.
However, there are circumstances in which it is not appropriate for patients to read their medical notes. BIDMC physicians were given the opportunity to exclude patients, such as those who are actively psychotic, for whom reading the notes would be provocative.
"I didn't exclude patients who are challenging or difficult," Brockmeyer explains. "I only excluded those who were in the middle of major psychiatric illness, such as active psychosis, where I thought it would have been bad for them to read their notes."
Physicians should also give extra consideration to cancer patients or other patients facing a possibly terminal diagnosis. Thomas Feeley, MD, head of the Division of Anesthesiology and Critical Care at the University of Texas MD Anderson Cancer Center in Houston and executive sponsor of ClinicStation, a project similar to OpenNotes that launched in 2009, points out that not every cancer patient gets better, and physicians were worried that if patients read laboratory tests or x-ray reports that may indicate progression of their disease before they heard from their physician, it could cause anxiety. To avoid this problem, MD Anderson implemented a seven-day delay. If there are unexpected results in the laboratory test or x-ray report, the seven days provides the physician time to see the report first and contact the patient.
Physicians who are concerned that giving patients open access to their medical notes would create a heavier workload should be relieved to hear that is not the case, says Feeley. "At first, we had a few doctors complain that they had to explain to patients the content of the medical notes, but we just asked, 'Why is it a problem explaining this to your patients?' Since then, everyone has taken it as a plus," says Feeley.
In the three years since MD Anderson made its medical notes accessible to patients, the project has saved physicians time. For example, patients who would have normally called or emailed to clarify a question can simply refer back to the medical notes.
"We think there is a trade-off-for every patient who emails you, there is probably another patient who doesn't email you because they read the notes and answered their own question," adds Walker.
Giving patients easy access to their medical notes also decreases the redundancy of testing. Two-thirds of MD Anderson's patients come from outside of the Houston area, and when they return home, they can share their lab tests and diagnostic radiology results with their physicians. "Those things are immediately available with the patient's permission," says Feeley.
Despite physicians' concerns, the content of the medical records didn't have to change, says Brockmeyer. "Initially, for the first week or two, I spent some time thinking about how my words would sound to someone reading them without a medical background. I made minor modifications, and then I haven't done much beyond that," she says. When it comes to acronyms, such as CHF for congestive heart failure, Brockmeyer says some patients with CHF may already know what that means, but she tries to simplify or spell out most acronyms. Other types of medical jargon simply need a few modifications to make the terms understandable to the lay reader.
And the cost? "In the big picture of IT initiatives, it was one of the least expensive things we have ever done," says Feeley.
Walker adds that if a hospital doesn't have a Web portal, sending patients a photocopy of the medical notes after each visit via mail is better than nothing. "This doesn't have to be electronic, even if it is mailing people copies of their notes after visits. I just have to believe that getting patients notes is a good thing."
Patients take charge
According to BIDMC's initial survey results and anecdotal evidence, patients were even more likely than physicians to describe the OpenNotes project as a success. Edward Leonard, a BIDMC patient who uses OpenNotes, says that the project has strengthened his relationship with his physician and empowered him to take control of his health.
"I was looking forward to reading my medical notes. I am an engineer, so I like detail. The way I view healthcare is I'm the one responsible for my own health, so it is incumbent on me to take on more responsibility. The more I know, and the better I can communicate with my physician, the healthier I will be," says Leonard.
A helpful feature of BIDMC's Web portal, which allows patients to view lab and diagnostic imaging results as well as their medical notes, is that it allows patients to track their progress. For example, Leonard has looked up his past cholesterol screening results and compared them to the most recent numbers, which motivated him to alter his diet and exercise regimen.
Leonard also explains that sometimes patients who are suffering from an ailment go into their doctor's appointments with tunnel vision. They may not be in a state of mind to absorb everything their physician has to say, so it's helpful to be able to go back to their notes and read what the physician said.
Patients at MD Anderson have shown just as much enthusiasm as the patients who participated in the OpenNotes project. According to Feeley, over the past three years, more than 40,000 individuals have accessed their medical records more than half a million times. Eight out of 10 patients who walk through the door of MD Anderson request an online account, and 84% of current patients have password access.
Feeley says that for hospitals to enable patients to view their medical records, patients need to start demanding access. They can't sit idly by and wait for it to happen.
"This has to be a patient movement-the patients have to step up and say, 'Let us see our information,' " he says.