Embracing the Changing Landscape of Medical Records Access

Until recently, retrieving a patient’s medical record was a labor-intensive process.¹⁰ A task such as accessing past lab results once required the patient or their legal designate to submit a written request to the medical records department. Several days to weeks later, numerous printed documents would be mailed to the patient. Today, accessing medical records is different; retrieving these same lab results takes just the click of a button.¹⁸ As a result of Health Insurance Portability and Accountability Act (HIPAA) and advances in health information technology, today, more than 75% of American patients have direct electronic access to their medical records.¹⁹

Various specialties are differently impacted by this new landscape of medical record access, but all physicians need to be aware of the evolving landscape of health care data and how this data is shared with patients. The purpose of this article is to provide a foundation for physicians who are navigating these new horizons. Understanding the evolution of medical records also helps in deciphering current regulations and their impact.

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History of Medical Records

The first known medical record dates to 1600 BC.¹⁶ The document, discovered in Egypt and known as the Edwin Smith Papyrus, describes the surgical treatment of war wounds and was written for didactic purposes. Over the ensuing centuries, key figures in the history of medicine, such as Hippocrates and Al-Razi, emphasized the importance of documentation for educational purposes.³⁵ New York Hospital, which opened in 1791, started keeping  patient records in 1793.^1,14 In 1898, patient notes documented at the bedside started to become part of the medical record.¹⁴

The development of computer technology led numerous institutions to establish electronic health records as a solution to problems inherent to paper records.¹⁵ This push towards digitizing medical information was motivated by the emergence of national health insurance systems in Europe and by demands of Medicare/Medicaid, health maintenance organizations and the Institute of Medicine panels in the U.S.¹⁵ Great strides have been made since the pioneering work of the 1960s and 1970s. The technology slowly gained wide adoption. However, by the 1990s, most physicians still did not have access to electronic health records and most patients still struggled to retrieve their medical data.^28,36

In an effort to organize medical records and the flow of health care information, HIPAA was signed in 1996 and enhanced in 2006 with the Enforcement Rule.³⁰ Since then, two additional elements of HIPAA have gone into effect; the Breach Notification Rule (2009) and the Final Omnibus Rule (2013).³⁸ 

Key Dates in HIPAA History

Automating Patient Access to PHI

The HIPAA Privacy Rule defined protected health information (PHI) and the way this information should be issued, maintained and disclosed. It stipulated that patients must be allowed to review and amend their medical records.^21,30 After initial implementation of HIPAA, patients often found it harder to obtain their medical records, because physicians and hospitals often misinterpreted the law.³¹ These difficulties prompted the Department of Health and Human Services Office of Civil Rights (OCR) to issue guidance titled “Individual’s Right under HIPAA to Access their Health Information.”⁷

Current technology allows the release of PHI to patients to be fully automated. Implementation, however, has revealed new issues, including questions related to the impact of these “automatic releases” on the patients, the physicians and the patient-physician relationship.

Impact on Patients  

Except for psychotherapy notes and notes compiled in anticipation of a criminal or civil action or proceeding, the HIPAA Privacy Rule gave patients a legally enforceable right to see and obtain copies of their PHI upon request.^24,25 The push to give patients access to their PHI was driven by the goal of empowering patients to be in control of their well-being.^5,9,27,33

As technical advances drove medical data digital, most EHR providers were able to automate the release of PHI and prompted several studies designed to evaluate the impact of automatically sharing PHI with patients.^8,13,34,37 The findings of these studies varied considerably. Significant positive findings included improved patient satisfaction, enhanced patient-physician relationships and increased patient compliance.^22,26,27,37 Noteworthy negative outcomes included increased patient anxiety as well as patients reporting feeling distressed and confused after reading their medical records.^22,26,33,37

In a recent survey, patients that had access to their charts were more satisfied with their care than those who did not.²⁹ Patients who accessed their medical records also had a better understanding of their medical conditions. They felt more in control of their health and noted an increased sense of autonomy.¹¹ Patients accessing their PHI also noted greater confidence in their health care plan, which suggests increased patient compliance and adherence to medical treatment. Notably, patients reported that viewing their medication list was helpful to remember which medications they were to be taking.³³

In other studies, patients that accessed their charts also reported increased confidence in their physicians. Patients were more comfortable clarifying information, asking questions and expressing their opinions because they developed a better understanding of their condition and plan of care.³⁰ While most patients reported feeling reassured and less worried after reading their medical records, one study found that 11% of patients reported an “upsetting feeling” afterwards.¹⁷

This small subgroup in which patients were adversely affected by reviewing their own charts raises the question of who may or may not benefit from automating medical data release. Questions, such as the type of data that should be shared and the data that should be restricted, also arise. For example, it may not be optimal for patients to learn about their surgical pathology results through an email.¹² Such sensitive information is probably better delivered in context during an office discussion. Whether this data is the result of an excisional biopsy of a skin lesion or that of a brain tumor resection, these results may cause anxiety and be overwhelming to the patient.

Other imaging or lab test results might also be problematic. The mere wording of the radiologist report could raise concerns and misunderstandings, especially as they may be unrelated to symptom presentation. Incidental findings may be misconstrued, such as pineal cysts. Conflicting or complex readings, such a follow-up MRI showing a tumor recurrence versus radiation necrosis, may be challenging to understand. These all benefit from the guidance of a neurosurgeon’s expertise.

Other factors, such as co-morbid conditions, underlying problems, socioeconomic status and medical literacy, may further influence how results are received. Potentially susceptible neurosurgical populations include those with chronic pain, surgical complications and those with additive disorders. Given this, neurosurgeons need to be keenly aware of the evolving landscape of medical data sharing.

Impact on Physicians 

Traditionally, in the United States only 0.4% of patients request or access their medical records.³⁰ However, since the implementation of patient-accessible medical records services, such as Epic’s MyChart, things have quickly changed. Today, it is estimated that 75% of patients have enrolled in patient-accessible medical records services.³⁰ With easy access, there will likely be a rapid rise in utilization of this resource. Already, such access has changed traditional workflow with no new best practices clearly established. Most of these systems also allow the patients to ask staff questions directly. While calls may diminish, total volume of patient contact typically increases. Many patients do not want to wait for their follow-up visits to understand or discuss the results, even when they are not urgent or emergent.

There have been no formal studies evaluating the impact of automatic PHI release on physicians. However, burnout literature clearly identifies EHR as a significant contributor.^6,23,32 Any added burden related to automated release would be confounding. Any resulting delays might result in diminished patient satisfaction, which, in the long run, is known to be associated with worse outcomes and a higher risk of litigation.

Clearly, development of innovative workflows should be beneficial, resulting in fewer phone calls, diverting common questions from time-consuming phone calls to more efficiently resolved messages and allowing for enhanced automated responses for consistency and completeness. Physicians must assume equal responsibility for the situation and work closely with their staff to establish effective workflows. Opting out will probably not remain an option for long — perhaps the time has already passed — so neurosurgeons must glean what lessons have already been learned.

Recommendations for Neurosurgeons

The American Medical Association (AMA) has affirmed the right of patient access to their medical records and has also pledged to work with the Department of Health and Human Services to have HER vendors and IT meet the needs of both patients and physicians to optimize this process. They have also provided significant recommendations and resources for physicians as they navigate this new process.^2-4 Based on this guidance and our survey of the literature, physicians wishing to adopt automatic sharing of medical data and patient-accessible medical charts should pay attention to documentation and to the mechanism through which they automatically release PHI to their patients.

Documentation

One significant contributor to patients’ negative feelings after reading their medical records is traditional charting practices. In a survey of practitioners and patients, medical notes had entries that were “puzzling, offensive, alarming or upsetting.”²⁶ Expressly, it has been noted that surgeons, in particular, are prone to insensitive or non-supporting language in their notes.

Such notes, when reviewed by the patient, can damage the surgeon-patient relationship. In order to reduce patient confusion and improve the patient-physician relationship, physicians are advised to document while keeping in mind that their patients are likely to read their notes in the future. While physicians should not jeopardize the primary goal of the note, which is to explain the full extent of a patient’s condition and come up with a plan of care, this should be done using a supportive and respectful language.

Key Factors

• No-blame language or descriptive language is preferred to “labeling” terms. (For example, for a patient with alcohol consumption problems, the expression “Patient with alcohol use disorder” is favored over the expression “an alcoholic patient.”)
• Templates may be more pre-disposed to creating confusion that other types of notes.
• Consider completing the note with the patient present to help insure their understanding. This may also lead to modification of challenging phrases.

Throughout notes, physicians should also strive to reduce patient confusion by being clear and concise during documentation. While abbreviations and number scores (i.e., BMI, GCS, mRS) are necessary and often indicated, recognition of the potential for resulting confusion is important. As with all physician communication, physicians need to be mindful of the medical literacy of their patients when writing notes. This can be impacted by multiple factors, including age, native language, educational level and stress.

Physicians can address barriers that might exist in their delivery of care through adequate communication that starts as soon as the patient-physician relationship is established and extends into every encounter between the patient and the physician through communication and documentation. A common misconception that some physicians have is that effective communication “takes too much time.”²⁰ In the long run, adequate communication is likely to generate fewer phone calls and to increase patient satisfaction.

Another new frontier regarding documentation is that patients have the right to have their notes changed. Physicians may respond through amending notes or explaining the rationale for their documentation without perceiving such patient requests as inappropriate. This need not become an area of conflict between the patient and physician, but it should not become an arena for claims related (possibly legally derived request) language to be inserted.

Controlled Release of Sensitive Information

Physicians must also understand how sensitive information is released to their patients. Different policies and practices are possible within the law and thus vary across institutions with regards to when and how new medical information is released. A common default setting is that all results are released simultaneously to the patient and their physician. However, many practices and institutions have adopted modified release. Individual physicians can also request specific modifications, particularly in the setting of pathology and radiology results. However, physicians who are part of a larger group adopting an institutional policy may find this more difficult. All neurosurgeons must, at a minimum, know what is being released and when. Those who have control should establish uniform policies through a consensus of their staff and best practices, within legal limits.

An alternative is to notify patients that they might receive results and tell them that these results will be reviewed during the next office visit. That can help the patients feel comfortable and diminish their anxiety. For optimal patient satisfaction, neurosurgeons should understand the new landscape of medical data. They should discuss their patients’ specific needs with the information technology officers they work with and implement what best serves their patients.

Additional Resources

• AMA Website
• AMA’s Patient Records Electronic Access Playbook
• HHS Website