FOR THE PAST six years, doctors across the country have been using an online system to share their medical notes with patients. Now researchers want to take the idea a step further—and let patients share their own notes with doctors.
Under the new plan, called OurNotes, patients not only can see their doctors' notes before appointments, but they can also correct mistakes, ask questions and let doctors know what they want to talk about during their visit. Doctors can then review what the patients wrote so they can spend less time asking questions and checking records during the session.
Researchers say there are technical bugs to iron out, and both doctors and patients have to learn some nuances about communicating with each other. But they hope that eventually this new system will bring a big change in the management of health care.
“My dream: The patient will have more skin in the game, they'll lift some burdens from exhausted doctors, and both will engage more actively and get more accomplished,” says Tom Delbanco, a faculty member of Harvard Medical School and Beth Israel Deaconess Medical Center in Boston, who co-founded OurNotes with his colleague Jan Walker.
A step forward
The system currently in place, called OpenNotes, was launched as a nonprofit effort at Beth Israel Deaconess with backing from large foundations. The system has achieved a wide reach: Almost 21 million people have ready access to the notes their doctors write about them through online portals.
But some creators of OpenNotes believe the initiative should give patients more of an active role in managing their care. So, together with several new researchers, they are developing the OurNotes system to let patients comment on their caregivers' observations and raise concerns.
Pilot studies for the new system will begin in the spring at Beth Israel Deaconess in Boston, Dartmouth Hitchcock in New Hampshire, the University of Colorado in Denver and two University of Washington sites.
OurNotes is also a nonprofit effort, with studies sponsored by the Commonwealth Fund, and will be free to use. In many cases, it will work like this: The doctor's office sends an email through a secure portal notifying the patient of a forthcoming visit and asking the patient to check the doctor's notes for accuracy, document what has occurred since the last visit and indicate what the patient wants to discuss. The patient sends notes that are automatically added to the doctor's records.
Matthew Germak, a primary-care internist and pediatrician at Beth Israel Deaconess and one of the developers working on OurNotes, thinks the new system alleviates some of the pressure patients can feel when asked questions in person. It also leads to greater accuracy in patients' records, says Thomas Payne, an internist at the University of Washington and a coinvestigator of OurNotes.
But perhaps the biggest advantage, many advocates of the system say, is that it makes doctors and patients alike more invested in care.
When patients contribute to writing their notes, it allows “for more time during the visit for both doctor and patient to be truly present and engaged instead of staring at a computer screen trying to enter the information as quickly as possible,” Dr. Payne says.
Adds Dr. Germak: “As patients begin to feel more invested in their care, they tend to develop increased awareness and more of an ability to self-manage.”
The system can also identify patient concerns that might otherwise be neglected. Joann Elmore, a professor of medicine at the UCLA David Geffen School of Medicine and an early evaluator of Open- Notes, tested OurNotes at the University of Washington's Harborview Medical Center. One patient wrote that she was concerned about an emergency-room CT scan
that showed “lumps on her lungs.” The findings were benign, Dr. Elmore says, “and as physicians, we would not have brought up the topic.” But because “this was very concerning to her,” she made sure to reassure the patient.
“When patients type information into the previsit notes, we learn about their concerns and are able to sometimes alleviate any stress or worry,” Dr. Elmore says.
Looking at conversations
Still, the system has a number of challenges to overcome. Digital medical records must be made more secure from hackers, and at the same time easier for patients and doctors to access. Also, for the system to work well, doctors should help patients understand how to present information. For example, Dr. Elmore says, lengthy notes aren't helpful. “I am a better doctor when my patients' comments are prioritized and organized.” Patient knowledge is also an issue.
“I would also like our medical records to someday have easy-to-use links for our patients, so they can quickly obtain definitions of medical words from a trustworthy source, instead of searching on the web,” says Dr. Elmore.
For their part, doctors must learn to be careful about how they use certain phrases and abbreviations. For example, abbreviations such as SOB and BS are used for shortness of breath and bowel sounds, but can be misunderstood. It's also important to avoid loaded terms such as obese, disheveled and unkempt, says Stephen Liu, a general internist at Dartmouth Hitchcock Medical Center and an OurNotes tester.
On the agenda
Dr. Liu has already seen results from OurNotes. Jameson Doig, a research professor of government at Dartmouth, has been a patient of his for a couple of years. Dr. Doig says he gets email alerts from Dr. Liu's office three to six days before an appointment, and sends emails back with the health issues and concerns he wants to discuss at the appointment.
“By writing down what my health concerns are, I have the opportunity to reflect upon my health and determine which issues bother me the most, while truly feeling like part of a team,” says Dr. Doig.
Many of the emails between him and Dr. Liu focus on balancing drugs to alleviate recurring leg pain. The process, says Dr. Liu, means they don't have to spend appointment time catching up. “OurNotes allows for more time on discussion, counseling and shared decision-making,” and also improves patient engagement, Dr. Liu says.
Jameson Doig (left) uses Our Notes to update his physician, Stephen Liu, on his health status. Dr. Liu says that allows for more time at appointments 'on discussion, counseling and shared decision-making.'
BY BARBARA SADICK