Why you should share notes with patients

January 9, 2018 |  Population Health, Patient Engagement

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Ample evidence indicates that improved patient engagement is better for doctors and patients. With EHRs and government regulations, the rise of patient portals has been dramatic. A recent AMA study says that 92% of hospitals offer the ability to view medical records through an online portal (compared to 43% in 2013). But availability of an online portal doesn’t mean patients are accessing or getting value from it. How can we help patients move from simply looking up lab results, requesting refills, and checking schedules to more active and meaningful engagement? One technically simple, but remarkably powerful answer is to have clinicians share their visit notes with patients. It’s something we call OpenNotes.

What is OpenNotes?
OpenNotes is not a product or a software program. It’s a growing international movement that offers patients easy online access to their clinical notes, typically through a patient portal. Written by doctors, nurses, therapists, or other healthcare professionals to describe interactions with patients, notes are part of the medical record. They have various names – visit notes, clinic notes, progress notes, or chart notes, to name a few. But when patients are invited to read these notes, they become "open notes."

OpenNotes began in 2010, with 105 volunteering primary care doctors and 20,000 of their patients participating in a yearlong, multicenter trial. The doctors invited their patients to read their signed visit notes through secure patient portals. At the end of the trial, results were quite remarkable, with striking reports from both the patients and their doctors. And since the initial trial, multiple other studies have yielded virtually identical data.

What did patients experience after a year of OpenNotes? 
Data from the initial study showed that:

  • 80% opened some or all of their notes
  • Among those taking medications chronically, almost 70% reported dealing with their medications more effectively
  • 75% reported some or all of the following health benefits:
    • Understanding their health conditions better
    • Taking better care of themselves
    • Feeling more in control of their care
    • Remembering the plan of care
    • Preparing better for visits
  • 99% wanted to continue OpenNotes, whether or not they chose to read their notes
  • 85% reported that the presence of OpenNotes would be important for choosing subsequent clinicians

Subsequent studies indicate that when patients and clinicians share notes, mutual trust increases as a result of full transparency and improved communication. This simple but profound change in the culture of care adds another level of accountability for both the provider and the patient. And if there is something incorrect in the notes, a second set of eyes helps with accuracy and safety. A clinician may have hundreds, or even thousands of patients, but individual patients have only their own notes. As they help in ensuring accuracy, they assist clinicians in creating a "learning EHR" loop system.

Above all, patients report that seeing their notes helps them take a more active role in their care, especially with managing chronic illness, and many studies indicate that active engagement leads to better clinical outcomes.

Caregivers and care partners also benefit from OpenNotes. Recent, unpublished data suggest that as many as a third of patients share their notes with others, and given poor recall for what happens in an office visit, active family involvement can make a big difference in ensuring that treatment plans are properly carried out. In a study published by the Royal Society of Medicine, as many as 40-80% of the patients immediately forgot verbal directions once they left the doctor’s office. With OpenNotes, caregivers frequently view the notes online through a patient portal together with the patient or with proxy access when available. 

What are the benefits to doctors?
Through years of helping organizations start sharing clinicians' notes with patients, we’ve seen that doctors are often hesitant to start. They worry that this will add to their workload, with increased emails and questions from patients; they worry they will need to increase the time they spend on documentation, and that they may confuse or worry their patients. Contrary to such expectations, we and many others find the opposite. For doctors, OpenNotes is basically a non-event, and very few patients are taken aback by what they read. The "go-live" with OpenNotes has shown this time and time again. It’s business as usual, with no extra time spent by the doctor in the vast majority of cases. Many doctors report writing better notes, and learning quickly to do so. We have not had reports that they have "dumbed down" their notes. Overall, communication with both patients and professional colleagues may improve.

What doctors really like about sharing notes is improved adherence to care plans by patients. With notes being shared and viewed by patients, care may benefit from fewer missed appointments, better follow-up on recommendations and referrals, and better patient adherence to medications. How can one argue against that?

Provider-patient trust goes up with this improved communication, and if a patient finds something incorrect in the note, it’s better for everyone that it was caught and not missed before trouble ensues. And when a clinician chooses to not share material with a patient, there are settings and options for what he or she chooses to share. At our hospital, which has used OpenNotes throughout for more than four years now, we find that the number of “hidden” notes diminishes over time. Today, far less that one percent are "blocked." 

For those instances where a provider legitimately doesn’t want to share information (behavioral health notes, confidential notes, genetic tests, or sensitive labs), there are settings and options for what you choose to share.

What are the benefits to health systems? 
Health systems can benefit from OpenNotes in a variety of ways. With Medicare reimbursement partially based on patient reported outcome measures, OpenNotes will likely prove helpful over time. From a population health perspective, scheduled appointments, referrals, and better adherence to medications helps form a business case, above and beyond indications that patient safety may improve. Moreover, patients become loyal to portals, especially when they represent fully transparent records. Several large organizations report that offering OpenNotes promotes “stickiness” to their practices. Again, many patients report that they would choose a healthcare professional based on the availability of OpenNotes.

But all that aside, the biggest benefit for healthcare organizations that I see is a cultural shift to greater transparency. Even though for the past 20 years HIPAA has given the vast majority of patients the right to review their records, sharing notes is not how the majority of clinicians have been socialized. Fostering care coordination with transparent notes takes a change in thinking for many, but the benefits continue to roll in as more and more patients gain access to their information. At the beginning of 2018, 5+ years after publication of the first study of 20,000 patients, more than 20 million people in the US are now invited to read their notes securely online using patient portals, and the practice is rapidly being adopted overseas and in Canada.

What’s the future of OpenNotes?
We’ve made strides over the past several years, but there is far more we can do. We are increasingly using OpenNotes for patients with mental illness, as therapists turn to using a note as part of the treatment process. And hoping to take patient engagement to the next level, we’re working on OurNotes - asking patients to co-produce records with their clinicians. Pilot programs will soon be underway, with patients providing histories before a visit, along with articulating their agenda for a visit. We hypothesize that over time this intervention may increase healthcare value by improving quality of care and decreasing costs.

To get involved and learn more about the movement, visit the OpenNotes website. If you'd like to share your experience implementing OpenNotes and become part of the movement, fill out the OpenNotes survey.

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Written by Tom Delbanco, MD, MACP, Co-Founder, OpenNotes

Tom Delbanco, MD, is Co-Founder of OpenNotes and the John F. Keane & Family Professor of Medicine at Harvard Medical School. Until 2002, he was Chief of the Division of General Medicine and Primary Care at Beth Israel Deaconess Medical Center in Boston, a unit he created and led for more than 30 years. Educated at Harvard College and the Columbia College of Physicians and Surgeons, Tom led the establishment of one of the first primary care practice and teaching programs at an academic health center. Subsequently, he created the Harvard Medical School Faculty Development and Fellowship Program that has now trained more than 250 general internists for academic careers. Tom is one of the founders of the Society of General Internal Medicine, serving as its President in 1986, and was the founding Chair of the Picker Institutes in the USA and Europe, organizations that document patient experiences with care and work with patients to improve health services.
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