By Mark Crawford
"Open Notes" Project Gives Patients Simple, Affordable, and Resoundingly Effective Access to Clinician Notes
Exactly who owns a patient's health record-answer, the patient-was once an unknown to many patients and non-HIM staff in healthcare. While HIM professionals have long helped patients access their health records, many patients didn't know how to request them or what their rights to the information were. Then in 1996, the widely publicized Health Insurance Portability and Accountability Act (HIPAA), which outright granted patients the right to request and review their medical information, cleared up some of the confusion. Even so, few people took advantage of the opportunity because it was often time-consuming and cost money to request printed copies. Also, some doctors were reluctant to encourage the access.
Today electronic health records (EHRs), patient portals, and a push by the federal government to give patients access to health information is making it much easier for patients to view and modify their medical records. But there are still pieces of the medical record locked away from patient access. One of the biggest hidden pieces are physician notes, those direct comments doctors write about patient visits. "Traditionally, one of the more one-sided elements of the doctor-patient relationship has been the notes from patients' visits to their doctors," says Richard Martin, MD, medical director of care continuum for Geisinger Health System, in Scranton, PA.
In the midst of a record release renaissance for patients, many doctors are still reluctant to give up their notes. The fact that most notes are recorded in free form text is also creating problems for electronic health record systems, which can't search and mine the data for research. In an attempt to open up physicians' notes to patients, the OpenNotes Project pilot launched in 2010. Patient advocates have called on all providers to adopt OpenNotes in their facilities with the hope of replicating the project's mostly positive results and changing healthcare for the better. The government and some health providers have listened. Following their participation in the pilot, several large healthcare providers are moving forward this year with implementing OpenNotes permanently in their facilities.
Physician Case for Keeping Notes Private
Physicians cite plenty of reasons for not wanting to share notes with their patients. A top concern is that fulfilling release of information requests would consume more time from their already busy day. Doctors also worry that letting patients see what they write about their health might also create undue worry or make a patient more anxious-especially if the physician does not have the opportunity to talk to the patient first or clarify an entry. Some doctors feel that patients would find their notes more confusing than helpful, since they are often filled with medical jargon or may include comments that could potentially be upsetting or offensive. Other concerns focus on the implications of sharing notes with family members and caregivers. Without the rest of the medical record to give context, physician notes could be misconstrued or misread. Some physicians also fear their comments might wind up on social media and shared with hundreds of people-a possible invasion of privacy for the physician. Other physicians are simply uncomfortable using notes as a method of patient communication.
But advocates for opening physician notes to patients say the move would lead to improved health management by allowing patients to better understand their health situations, ask better questions, and deepen their relationships with their physicians.
There is a larger-scale possibility, as well, Martin says. "What if, through the transparency of allowing patients to view their doctors' notes, patients became so engaged in their healthcare that their combined health improvement was enough to reduce the rate of chronic and metabolic diseases across the population and also decrease the overall cost of healthcare?"
OpenNotes Tests Positives, Negatives
To test these ideas, Jan Walker, RN, a researcher at Harvard Medical School's Beth Israel Deaconess Medical Center in Boston, MA, and Tom Delbanco, MD, a professor of general medicine and primary care at the same location, launched the OpenNotes Project in 2010.
Funded through a $1.4 million grant from the Robert Wood Johnson Foundation Pioneer Portfolio, the 12-month OpenNotes Project involved three hospitals with very different demographics, clinician cultures, and missions:
- Beth Israel Deaconess Medical Center, a Harvard-affiliated teaching center in the heart of Boston
- Geisinger Health System, a network of rural primary care clinics in Danville, PA
- Harborview Medical Center, a public hospital in Seattle, WA, that serves a large population of low-income patients with chronic diseases
"More than 100 primary care physicians and 20,000 patients from those three institutions helped us study the merits of letting patients view visit notes," Delbanco says. "We first examined and reported on what patients and doctors expected before the project started so that we could compare their answers with what they actually experienced one year later."
The research set out to answer three key questions:
- Did OpenNotes help patients become more engaged in their care?
- Was sharing medical notes going to unduly burden physicians?
- After one year, did patients and doctors want to continue?
OpenNotes By the Numbers
As part of the OpenNotes pilot project, researchers surveyed participants on how access to physician notes affected healthcare. The survey found:
- 82 percent of patients opened at least one of their notes
- 1-8 percent of patients across the three pilot sites reported the notes caused confusion, worry, or offense
- 20-42 percent of patients shared notes with others
- 70-72 percent of patients across the three sites reported taking better care of themselves
- 77-85 percent reported better understanding of their health and medical conditions
- 76-84 percent reported remembering the plan for their care better
- 69-80 percent of patients felt better prepared for visits
- 77-87 percent felt more in control of their care
- Among those taking medications, 60-78 percent reported "doing better with taking my medications as prescribed"
- 99 percent of patients wanted OpenNotes to continue
- 17-26 percent of doctors preferred not to continue, but when offered the chance to stop, none did
- 85-89 percent of patients said the availability of open phyisican notes would influence their future choices of doctors and health plans
Project Nets Powerful Results
Patients in the study utilized secure patient portals to access their primary care doctors' notes online for one year between the summer of 2010 and summer of 2011. Patients received reminder e-mails when the notes became accessible. "By contrasting the experience of trial participants with un-enrolled physicians and patients, the researchers could measure the impact access to the notes had on patients' engagement in their care," Martin says. At the conclusion of the study, Walker and Delbanco were pleased to report that very few doctors said their workload was impacted by sharing notes with their patients. "Only a few reported that patients seemed worried by the notes," Walker says. "Patient visits were not significantly longer. Doctors did not have to spend more time addressing patient questions outside of visits. They also didn't have to spend a lot more time writing, editing, or dictating their notes."
Patients were "wildly enthusiastic" about the program, according to Delbanco. "Whether young or old, healthy or sick, well educated or less educated-everyone liked the idea," he adds. "Patients also read their notes. More than eight of 10 reviewed notes at least once."
Patients also reported that they felt more in control of their care and better understood their treatment plans. Only a few patients indicated the notes were confusing or made them worry about their health. A large number of patients shared their notes with family members or caregivers. "Overall, about three-quarters of all participants reported that they took better care of themselves, had better understanding of their medical conditions, were more committed to their treatment plans, and did a better job of following prescription regimens," Walker says.
Becoming Better Communicators through Notes
A big reason doctors are reluctant to show patients their notes is because they think patients might misinterpret the notes or reports without the guidance of the physician to explain the findings and put them in a proper, and perhaps less alarming, context.
"A doctor might make a note of a potential diagnosis-for example, cancer-that in the doctor's mind is a very remote possibility," Martin says. "Reading this could cause undue anxiety for the patient. Or a doctor might note that a patient is 'SOB,' or short of breath. This could understandably offend a patient who doesn't understand what the abbreviation means."
Reading notes could cause anxiety or damage the doctor-patient relationship in some cases, says Robert Harrington, MD, professor of medicine at the University of Washington in Seattle. This could especially be true if patients see comments regarding possible substance abuse, psychiatric problems, somatization, or other sensitive topics.
An interesting side result that OpenNotes researchers found is that after making physician notes available to patients, doctors were more careful writing them-reducing jargon, making notes easier for patients to understand, using words that wouldn't be misinterpreted, and being more sensitive to patients' feelings.
"For example, a physician might choose to use the word 'overweight' instead of obese, 'injection drug user' instead of abuser, and 'axis II personality' instead of narcissistic personality disorder," Harrington says.
Sharing notes was found to build the relationship between patients and physicians. "Doctors don't spend much time with patients," states Thomas W. Feeley, MD, the director of the Institute for Cancer Care Innovation at the MD Anderson Cancer Center, part of the University of Texas in Houston. "Making notes available to patients changes the way doctors think and makes them more aware of how their words may be interpreted. Even simply adding a few words of encouragement in the note can be a huge motivator for the patient." Feeley knows this because in 2009, a year before OpenNotes launched, MD Anderson Cancer Center opened its physician notes to patients. The center made the notes available through secure portals, with many of its doctors voicing the usual concerns.
"We essentially got the same results as [OpenNotes]," Feeley says. "Patients better understood their care. They could go back and read what the physician said if they had questions about the treatment plan. Staff received fewer phone calls about transcripts and lab results.
"This allowed HIM staff to be more efficient and less interrupted from their normal tasks. We discovered that when patients are better informed, they actually ask fewer questions."
Feeley notes that the change improved physician behavior in a positive way. In addition to carefully wording their notes, physicians also increased the speed at which they followed up with patients. Some safeguards were enacted.
"A big concern we had, especially for cancer patients, was that they would access test results online before talking with their physicians about those results-especially if it was bad news," Feeley says. "We decided to place a seven-day delay on releasing X-ray and lab results to patients, which gave our clinicians a week to look at the report and contact the patients. This improved our speed and efficiency."
OpenNotes Easy to Implement
All it takes to start an OpenNotes-like initiative at a healthcare facility or doctor's office is an electronic health record system and the IT capability to provide patients secure access through portals. The ability to send e-alerts to patients when physician notes are ready to be viewed is also necessary. "For growing numbers of institutions, the process for enabling patient access to notes through patient portals is no longer an arduous task," Walker says. "HIM professionals are integral to the preparation of patient portals and governing the degree of transparency that is provided to patients. Reprogramming is clearly necessary-however, this process takes weeks, not multiple months, to accomplish."
Institutions that decide to fully open records to patients will need to decide the best way to implement this process for their specific situation, Delbanco says. "There are a number of ways to provide opt-out strategies [that give] initial comfort to clinicians who are resistant," he says. "But as transparency becomes more of a mainstay in medicine, we think open visit notes can be promoted as an inevitable tool-one that is integral to the patient-centered medical home, helps patients and families contribute to safety and better quality, and provides caregivers with vital information they need to provide the best care."
Moving OpenNotes Ahead to Wide Adoption
Delbanco is delighted that, despite initial resistance, not a single doctor opted out of OpenNotes after the study was concluded despite the offer to do so. "To us, that was the real test," he says. "One doctor's comment best summarizes the collective experience: 'My fears were longer notes, more questions, and messages from patients. In reality, it was not a big deal.'
"Another doctor in our study said he felt like his care would be safer, since patients would be able to update the doctor if he didn't get it right."
Many doctors see value in transparency as a way to foster partnerships with patients in care management. It is also clear that patients want to play a more active role in the clinician's notes. An OpenNotes survey conducted with participants following the pilot revealed that:
- 30-40 percent of patients wanted to be able to approve what was written in their notes
- 59-62 percent wanted to add comments to their notes
"The logical evolution is that, in the future, we could see patients and doctors sharing in negotiating, generating, and signing the note," Delbanco says. Other possibilities are virtual visits with notes initiated by patients, co-generated notes as individual quality contracts, as well as metrics for assessing both patient and clinician performance. Beth Israel Deaconess Medical Center plans to expand OpenNotes through its entire system by the summer of 2013. Geisinger Health System will soon implement OpenNotes for all its primary care doctors and many of its specialists. Harborview has plans to open its notes to all patients soon, and the Veterans Affairs Administration is also interested in using OpenNotes throughout its network of hospitals.
"We're getting requests from big and small providers around the country, asking how to do this," Walker says. "We are also in the process of compiling a toolkit to help these institutions implement OpenNotes and share best practices.
"We are very excited about the enthusiasm OpenNotes has generated and are hopeful that we can keep this moving forward."
Delbanco, T., Walker, J. et al. "Inviting Patients to Read Their Doctors' Notes: A Quasi-experimental Study and a Look Ahead." Annals of Internal Medicine vol. 157, no. 7 (2012): 461-70. http://annals.org/article.aspx?articleid=1363511.
Mark Crawford (CrawfordLiterary@gmail.com) is a freelance writer based in Madison, WI.
"Declassifying Doctors' Notes"
Journal of AHIMA