Chapter Seven: My Records and Meds

Chapter7 begins with a discussion on Electronic Medical Records (EMRs). In the US, the Federal government has spent billions incentiviving physicians and hospitals to adopt medical records, but… do EMRs really work?

Although we have established the ability to generate Big medical data about an individual, there is no EMR system currently able to manage it in a meaningful way. This is because there are a number of obstacles of which the most frustrating is the difficulty patients have to access their own medical records.

Achivieng access to one’s medical records remains one of the most frustrating experiences in the world of health care…

As far back as 42 years ago, Bedd Shenkin and David Warner proposed, in a paper published in the New England Journal of Medicine, legislation to give patients full access to all of their medical records. That proposal has never been adopted. 

In recent years, there have been encouraging signs of progress in this field. In 2012, the Shenkin and Warner proposal was tested in an experimental project called OpenNotes. More than twenty-two thousand patients from 3 well-regarded medical centers received access to their office visits notes. There was no net increase in time required by physicians, patients were more engaged and satisfied, and the patient-doctor relationship was strengthened. An improvement of the adherence to therapy was observed in about 65% of patients.

Despite the success of the OpenNotes project, only 2 million patients in the US have access to their medical notes. In the author’s view, the main reason for such a limited access is a vestige of medicine’s ingrained authoritarianism. Like elsewhere throughout the book, in this chapterTopol argues that paternalism still influences the minds of the majority of physicians. Of particular interest are data from a recent poll: only 31% of physicians approve of patients’ access to their notes, even though 84% of patients believe it is their right to have it.

Fortunately, a large-scale government initiative, the Blue Button program in the VA, is enabling patients to download their health data. Now, at least in theory, over one hundred million Americans can download their medical data. This is certainly a great step forward, but a lot more work is needed to inform patients and make it user-friendly.

…We feel like we are in the Model T stage of this type of transparency
— Jan Walker

Certainly, there are many setbacks. EMRs are time-consuming, especially considering the time spent entering data into the computer. Moreover, when compared to paper records, EMRs have not shown any reduction in the percentage of medical errors. This is still a nascent phase, in Topol’s view, we could regard the current phase as the Model T stage of this type of technology.  Nevertheless, if EMRs were fully implemented in only a small fraction of current medical practices, this would be cost-saving with a significant reduction in demand for physicians. 

The second part of chapter 7 deals with medications. The author introduces some products of smartphone apps and devices, including Mango Health, CyberDoctor, AiCure, Nightingale, MediMinder, MediSafe, and Care4Today.  All these smartphone apps improve medication adherence, helping patients track the correct dose and timing of their meds.  The works like the most popular Shazam app, but it uses the camera and database to identify medications instead of songs. 

Among medication adherence digital hardware tools a special mention should be given to the Proteus Digital Health: an ingestible sensor put in a single pill to digitally record ingestion and share information with healthcare professionals and caregivers.

In the next future, medical data will be obtained from digital resources, such as smartphone and wireless medical devices and will be patient-generated.  Although this is still far away, the Kaiser Permanente health system with a mobile app can be considered an example of future EMR which gives its members full access to their medications, records, lab tests, and results of scans.  

In this nascent phase, patients are fighting to gain access to EMRs, but the final goal for the future must be individual ownership. Obviously, this aim is beyond technology itself and is strictly related to a paradigm shift in the paternalistic view of most physicians which should be ready to open their minds to this revolutionary change.