OpenNotes - when the patient knows what he is sick with and how he is treated

Usually, you visit your doctor for an illness or an annual medical check-up. During the appointment, the doctor measures several indicators – pulse, blood pressure, weight – which often do not allow judging the state of health in general. If you suspect a serious illness, you can be sent for more detailed studies and tests or to a specialized specialist. But what if an annual physical is far from the most effective method? Routine examination provides the doctor with little information, but it is also time-consuming. Lack of timeliness or lack of information does not allow timely diagnosis of serious health problems. Most of your medical record consists of sporadic measurements, fact statements and diagnostic codes that are useful for billing services. Too much of the collection and use of health information is solely for the needs of doctors, pharmacies, hospitals and insurance companies. The emphasis on acquisition and analysis should be shifted towards patients.

This will require much more than reorganizing health insurance systems. Many patients are reluctant to share information about their well-being even with their doctor. People may fear criticism for unhealthy lifestyles, or hope that the problem will resolve itself if ignored. They may think that doctors and insurance companies are treating sensitive information as carelessly as everyone else. Some have even become convinced that their health data can be used against them – they can increase the amount of the insurance premium or refuse to provide insurance compensation. It will be beneficial both in the short term and in the long term, if we stop fearing that information from our medical records could be used against us and provide reliable data about our well-being.

There is another, but related problem. Patients’ full access to information in their medical records, including test results, has recently become common practice, despite the fact that this information plays a key role in the process of making important life decisions. The reason for the secrecy is that the doctors’ notes were made without taking into account the patient’s point of view.

Openness is the new ethic

Program OpenNotesinitiated by the doctor Tom Delbanco from Harvard University School of Medicine, helped make medical records more accessible. It is developing at a very fast pace: in 2010, 19,000 patients participated in a pilot project, and already in 2016, 8 million people were registered through the OpenNotes function in MyChart. The pilot project provided patients with secure access to their official medical records with test results, diagnoses, prescriptions, doctor’s notes and future recommendations. Each time a new doctor record was added, the system sent an email notification to the patient. 80% of patients reviewed the medical records, who confirmed that such transparency allowed them to better understand their state of health and establish confidential contact with the attending physician. In addition, in a pilot project, patients asked for the opportunity to make edits and additions to records (OurNotes concept). This could be necessary to document the side effects of prescribed medications or to eliminate misunderstandings and correct errors – for example, if during the appointment the doctor recorded that the patient drinks on average 100 grams of alcohol daily, although he spoke about 100 grams on average per week. As the program expanded, an increasing number of patients were asked to correct information provided to them or clarify medical terms.

OpenNotes also broke the taboos of giving patients the tapes of their therapists and other mental health professionals. Psychotherapists have often argued that reading their mental health records can have devastating consequences for the treatment process and the patient’s well-being. Such defensive paternalistic approaches to mental health are not very different from the practice of hiding medical information from women until the middle of the 20th century. They were considered to be overly impressionable, so their health and medical decisions were discussed with their spouses or fathers. Delbanco believes that “the patient has an equal right to know what the doctor writes in the case when his leg hurts, and in the case when his soul hurts.” In addition, greater transparency and freedom of choice for patients in connection with medical decisions reduce their feelings of anxiety and isolation, increase the level of trust in the doctor, encourage behavior change and thus contribute to improved long-term outcome. By reviewing the recordings of the sessions, patients may also mentally remind themselves of the adaptation mechanisms and other techniques discussed with the therapist.

Family therapist and physician, Lisa Cooper, vice president of Johns Hopkins Medicine, recently joined the OpenNotes board at the invitation of Tom Delbanco. Personal experience has strengthened her professional commitment to open clinical notes. When a family member needed care, knowing the rationale and treatment options, the names of tests and drugs, and the date, time, and place of service, allowed her and her family to protect their interests. “We could ask the questions we needed to ask, talk about our needs and preferences, and make sure we got what we needed from the right people in a timely manner. Coping with a disease without such resources is like being in a foreign country, not understanding the language or not knowing how to navigate the terrain. OpenNotes can provide detailed guidance for patients and families. “

Personal chat with a doctor

The exchange of notes is carried out through a special portal for patients Mychart – an online application available on the Internet at any time of the day: in the form of a website and modules added to the existing electronic medical record (EMR) system. A central feature of the portal is the ability to provide personalized patient health information and interact with healthcare providers. Portal applications allow patients to register and fill out forms online, making it easier to visit clinics and hospitals. Many portal applications also allow patients to request repeat prescriptions over the Internet, order glasses and contact lenses, access medical records, pay bills, view lab results, and schedule appointments. Patient portals also allow you to communicate directly with healthcare providers by asking questions, leaving comments, or sending emails.

Healthcare providers in the United States are required to comply with the Health Insurance Act rules(Health Insurance Portability and Accountability Act, HIPAA)… These rules determine what information about patients should be kept secret. Something as seemingly trivial as a name is considered protected information by HIPAA. For this reason, safety has always been the industry’s top concern when deploying patient portals. While there may be systems that are not HIPAA compliant, most patient and medical practitioner portals are certainly safe and HIPAA compliant. The use of SSL and access control patterns is common in the industry. Patient access is usually verified with a username and password.

Do not harm … doctors

Doctors have wondered if transparency is the best policy when it comes to notes that include medical terms such as morbid obesity, which have negative connotations for non-specialists, or psychiatric diagnoses, the knowledge of which can only exacerbate the condition of patients.
Overwhelmed doctors feared that access to their records for patients would increase their workload. But in the demo study, only 3% of doctors reported spending more time away from visits answering patient questions, and email volume remained unchanged. 20% said the way they wrote about cancer, behavioral health, substance abuse or obesity had changed, and 11% said they spent more time writing and editing their notes. However, at the end of the study period, all participating physicians decided to continue making their records available to patients.

Map of US facilities where OpenNotes is practiced

More than 44 million patients have access to clinical records in 210 healthcare systems in North America. In 2013 U.S. Department of Veterans Affairs unveiled an enhanced version of its Blue Button personal health record, including access to clinical records.

Treatment law in the 21st centurypassed by the U.S. Congress in 2016 requires patients to be given free access to all medical information on their electronic health records from a healthcare provider, including notes written by their doctors. In 2020 Office of the National Coordinator for IT in Healthcare published the final program rule for the Treatment Law, according to which clinical notes must be available upon request in the format desired by the patient.

Clinicians who share notes do not undergo significant changes in reporting workflows, and most agree that sharing notes is a good idea. More than half of the doctors who participated in the study believed that the exchange of records increased patient satisfaction and confidence. In a study on the implementation of open notes, 15-20% of doctors reported minor changes in their approach to medical records. While the changes to documentation are usually small, some clinicians reported that after the introduction of note sharing, they spent more time on documentation and new methods of writing notes that were patient-friendly:

Avoid acronyms and acronyms that can mean something completely different to patients;
Avoid derogatory language such as “non-compliance” and “unreliability”. These observations are better documented with facts than used to describe the patient.
Avoid copying and pasting information into the diagram. Copying and pasting can be confusing for patients and other doctors.
Use simple language;
Timely signing of notes.

In a study of 3 sites where patients had access to notes and read them for more than 1 year, the overwhelming majority of respondents (96%) reported that they understood “all or almost all of the notes.” When asked, the patients suggested the following ideas to make the notes more meaningful and understandable:

Restructuring notes so that the most important information is at the top;
Avoid medical jargon and / or include mouse-over features in the online patient portal to define terms and abbreviations;
Avoid potentially judgmental language such as “patient denies” or “obese”;

A survey of 22,889 patients reading notes showed that one in five patients surveyed can find errors in their records of visits; the most common mistakes are related to diagnosis, medical history and medications. More than 40% of those who reported finding an error called the error “serious”.

In 2020 in the magazine JAMA Network Open published a survey of 1,628 clinicians (including physicians, nurses, physician assistants, therapists, and others) who shared clinical records with patients for a year or more. The study found that 74% had a positive attitude towards sharing notes, and most of them felt that the practice did not affect their workflow and would recommend it to colleagues in other institutions.