I want to add to my medical record and read your notes ? should you let me?

Thursday, April 6, 2017 | Larry Sobal

 

I must confess, I have this burning desire to be able to log into my electronic health record (EHR) to not only read my physician’s notes about me, but to enter my own notes about what’s going on with my health. And just so you know, I’m not some crazy hypochondriac who’s convinced I have a bunch of diseases I read about online (or at least I don’t think I am). I simply want to have a better partnership with my primary care physician (and occasional specialist) and become an active part of my health care team. Should I be able to do this?

There was a time when doctors were protective of the information they entered into a patient’s record. However, with the advent of EHR and the desire by patients to have true transparency in health care, there are now ways for physicians to share all notes, lab results and X-ray images to allow patients to be more involved in their own medical care. While there is evidence that providing patients with unfettered access to their medical record improves communication and treatment adherence, many physicians remain skeptical.

Personal health records or patient portals are not new ideas to the health care industry. It’s been a consistent idea with pilots and formal methods for many years, but has made little significant headway due to a lack of engagement from patients, an unwillingness of promotion from the provider side, and limited technological capability to allow it to happen easily. I can tell you that most physicians I talk to are either strongly against the idea or at least very apprehensive. But that is changing.

The data seems to support that this is an idea whose time has come. According to a recent CDW survey of 200 patients and 200 physicians and physician assistants, 98% of patients say they can access a patient portal, up from 60% in 2016. In addition, a recent West survey found 75% of chronic patients want their health care provider to touch base regularly so they can be alerted if anything looks off (only 30% of patients report receiving regular check-ins to review progress). On the technology side, the CDW survey found only 29% of patients would give their providers an "A" for their use of technology, while 89% would like to be able to more easily access their EHRs.

Another study, this one published in the Annals of Internal Medicine, reported that up to 97% of patients queried thought the ability to have “open visit chart notes” was a good thing. Finally, a recent survey conducted by Transcend Insights found that a vast majority of patients (97%) believe it is important for any health institution, regardless of type or location, to have access to their full medical history in order to receive high-quality care.

When physicians share notes with their patients, it allows for a more open dialogue between doctor and patient, which can build trust and lead to more motivated and adherent patients.

 

It appears that patients have a much stronger desire than physicians to see this happen, but it would be unfair to say that physician resistance is what keeps patient access to their EHR from happening.

First, it’s important to know that your medical records do not belong to you, they are owned by your doctor (or his/her employer). If you manage to get your hands on a copy of your own medical records, it is due to the privacy rule of 2000, which requires medical providers to let patients have a copy of their records at a “reasonable cost.” Interestingly, despite the fact that 94% of the hospitals in the United States have now adopted a certified EHR system, many state regulations are still focused on the paper records. (Although creating an electronic portal in which patients can have access to their records is a part of the criteria for the Stage 2 of the Meaningful Use incentives, the large majority of medical providers still have not met this standard.) It is estimated that less than 25% of hospitals and physicians are technologically able to securely share patient medical records outside of their own EHR. And even the minority of patients who could potentially access their records via portals may not be fully informed about the existence of such technologies.

Another reality that may slow patient access to medical records relates to cyber security. According to an article in Tech Times, health care providers in the U.S. may lose $305 billion in the next five years due to cyberattacks. And this is a real concern since we live in a time when health record databases have started to include a terrifying amount of extremely intimate information about illnesses, diagnoses, treatments and health issues.

Once a criminal has your personal information and insurance details, he or she can use it, or enable another person to use it, to gain access to the health care system in your name, and the result could be the contamination of your medical records with his or her co-mingled information. Nothing is more dangerous than going to a hospital and having “your” medical records, as used by an identity thief or his/her customer, reflect an inaccurate blood type, medical history or the existence or absence of certain allergies as you are trying to access care, particularly in an emergency situation.

Those are all valid reasons for not allowing me access to my records, but I’d like to convince you that the positives outweigh the risks.

First, there is already a longstanding process in place. In 2010, 105 primary care physicians from Beth Israel Deaconess Medical Center, Geisinger and Harborview Medical Center started sharing their medical notes with approximately 20,000 patients for one year. By the conclusion of what was called the OpenNotes study, all of the physicians involved continued sharing notes. That sparked a huge interest in OpenNotes, and ever since, there has been an increasing number of prominent health systems and doctors who have opened up access to their notes to their nearly 20 million patients.

Second, according to the Robert Wood Johnson Foundation, the creators of the OpenNotes study, when physicians share notes with their patients, it allows for a more open dialogue between doctor and patient, which can build trust and lead to more motivated and adherent patients. Additionally, it may enable patients to feel empowered and be more willing to discuss topics that may be difficult for them.

Among the benefits cited by OpenNotes participants are:

• Better communication and transparency between the patient and physicians
• Improved patient engagement and empowerment resulting in higher patient accountability and adherence to treatment plans
• Clearer documentation as physicians learn to note in a patient-friendly language and tone with the knowledge that patients will be reading them
• Patients can double-check notes for accuracy and update physicians about their status

Third, another pilot, related to the Nuance Technologies Survey, suggests a possible way for the EHR to reduce unproductive and unsatisfying physician administrative time by allowing patients to set agendas before appointments so patients and clinicians can optimize their time together. Having patients propose their own office visit agendas could give the clinical encounter a more collaborative feel and increase patient engagement—a key component of accountable care organizations and patient-centered medical homes.

None of my local physicians offer this option—yet. But I can assure you that once there is a physician in my area who offers access to my medical record with the ability for me to add my own notes, I would switch physicians in a heartbeat. And I suspect millennials, who demand to do more online than I do, will also flock to this type of physician and hospital. So my message to physicians and hospitals everywhere is: resisting the idea of sharing notes with patients will be done at your own peril.

 

Illustration: Lee Sauer

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Larry Sobal is Executive Vice President and a Senior Consultant at MedAxiom. He has a 35-year background as a senior executive in medical group leadership, hospital leadership and health insurance. Larry consults, writes and presents on topics relevant to transforming physician practices and health systems. His weekly blog post comes out on Thursdays and can be accessed at www.medaxiom.com.

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