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Posts tagged with "open notes"

Open Notes: New Beginnings for Patient Engagement




In January I wrote a post about a study funded  by the Robert Wood Johnson Foundation that was looking at physician and patient reaction to a program that enables patients to access their doctor’s notes recorded during an office visit and stored in the electronic health record. The objective of the study was to evaluate the effect on doctors and patients of providing patients with  access these notes using secure patient portals.


The study included 105 primary care physicians, and 13,564 of their  patients at three locations: the Beth Israel Deaconess Hospital in Boston, MA, Geisinger Health System in Pennsylvania and Harborview Medical Center in Seattle Washington.


The results, reported this week  in the Annals of Internal Medicine, indicate  that of a total of  13,564 participants, 11,797  opened at least one note;  77-87% of them reported that open notes made them feel more in control of their care; and 60-78% reported increased medication compliance with the availability of the notes. A small percentage, 1-8% reported that the availability of notes caused them to feel confused  and worried.  Additionally,  almost 90% believed that having these notes affected their decisions when seeking care in the future.


In other words, on an overall basis, this study proved that  a majority of  patients like access to their primary care physician’s notes and will use them to increase their understanding of their health issues. Engaging these patients in this way will impact their quality of care. Furthermore, physicians who had been concerned that access to notes would cause patients to become worried realized that this only happened in rare instances. They also learned from the study that patient access to notes ended up having  far less impact on the physician’s time than they had anticipated.


For Open Notes to work there has to be a secure way to transmit information to the patient.  In the case of the three institutions involved in the research, they all had a  secure patient portal through which the notes could be accessed by patients. However, patient portals are not ubiquitous and will not be for some time, as they are costly to implement and maintain, particularly for  small group practices and community hospitals that comprise the bulk of our medical delivery system in this country.


Although it is possible for doctors to  produce patient  notes on various media from old-fashioned paper to CDs and flash drives, this  puts an added burden on the physician’s office.  However, doctors  may not have  a choice about providing notes  in the near term as one of the mandates of Meaningful Use of Electronic Health Records,  Stage 2  clearly states that by 2014, all physicians must provide patients with: (1) a copy of their electronic health record; (2) clinical summaries of their office visit (3) appointment recalls; and (4) timely access to health information.


The completion of this study reinforces that Open Notes  promotes the type of patient/physician  relationship that  furthers  patient engagement and empowerment and ultimately will  help improve the health of patients, increase medication adherence  and hopefully bring more efficiency into the health care system by reducing unnecessary office and ER visits.


The Opportunities and Threats with Open Notes

We know that more and more physicians are implementing electronic health records. (see post Thursday January 12, Update on EHRs). Now the question becomes how do patients share the information in those records so that they are better informed and can be empowered to do more about their health issues? Dr. Tom Delbanco at the Beth Israel Deaconess Medical Center in Boston (BIDMC) has come up with a solution entitled Open Notes, which would give patients access to the doctor’s notes in their record through a secure online portal.

A pilot study of Open Notes that included 25,000 primary care physicians and patients from the BIDMC, Geisinger Health System in PA, and Harborview Medical Center in Seattle WA, and funded by the Robert Wood Johnson Foundation, concluded that patients really like the idea because they see this as a way to a greater understanding of their issues and more involvement with their care. Physicians on the other hand are less than enthusiastic and have concerns about accountability and privacy of patient information.

Patients do have the legal right to their health record. They can request copies and changes to them if they’re inaccurate. With the digitization of health records the data included is readable , although not always understandable for the average individual. Historically, test results, lab reports, medication lists and medical history comprise the record turned over to the patient upon request. The copy does not include the doctor notes. Patient respondents who were very enthusiastic about Open Notes felt that reading notes taken during their visit with their primary care physician would help them grasp more thoroughly what the physician recommends and help in following the treatment plan. In addition, many patients indicated that they would share the notes with other physicians/specialists who were treating them concurrently. A third of the patients had concerns about the privacy of their health information.

The issue here is how communication between doctor and patient is handled and the trust relationship that is in place with full disclosure of notes. Physicians must be protected from the litigious nature of many patients who might decide to challenge what is in the notes. This could be a problem since there is currently no legislation that specifically addresses this issue. Patients must be protected from the delivery of their notes to unauthorized individuals or inadvertently to social networks and other public exposure. There is also the issue of secure communication of this information. There are only a handful of physician practices or hospital physician groups that have the type of secure portals necessary for enabling the communication of notes in an environment where the privacy of this information is well protected.

As digital communication technology becomes more ubiquitous, empowered patients and enlightened physicians have many practical and ethical considerations, including Open Notes policies, as we all strive toward the goal of better quality, safer medical practice.