Patient Access to Electronic Health Records: Overview
Patient access to electronic health records (EHRs) has evolved significantly over the past few decades, transforming from a process that was largely restricted to medical professionals to one that encourages patient involvement in their own healthcare. Historically, accessing health records required navigating complex legal hurdles, often resulting in a lengthy and costly process. However, regulatory changes beginning in the late 1990s began to shift this paradigm, culminating in the 21st Century Cures Act, enacted in 2016 and effective in October 2022, which mandates that healthcare providers offer free online access to digital medical records.
With the transition to electronic systems, patients can now easily obtain important health information, such as lab results and appointment details, via secure online portals. This accessibility is lauded by many as a means for patients to enhance their understanding of their health, engage more effectively with healthcare providers, and identify potential errors in their records. Nonetheless, concerns persist regarding how this information might impact patients, particularly those without medical training, and worries about the privacy and security of sensitive health data stored online. As healthcare continues to integrate technology, the dialogue around patient access remains vital, balancing empowerment with the need for clarity and privacy in medical information.
Patient Access to Electronic Health Records: Overview.
Introduction
For decades, access to patient health records was limited almost exclusively to medical professionals and insurance companies, and patients who wished to access their records were typically forced to undergo a complex legal process. During the late 1990s and early 2000s, new regulations stipulated that patients have the right to request and obtain copies of their health records. Eventually, federal laws passed as part of the 21st Century Cures Act, which went into effect in October 2022, required healthcare providers to provide patients with free online access to their digital medical records.
As such records typically existed only in paper form, obtaining copies was often a time-consuming process, and many medical facilities charged fees for access to records. The move to electronic medical records systems in the early twenty-first century simplified the process somewhat, allowing patients to obtain copies of their records in digital form, such as on compact discs or through email; however, patients still had to request and sometimes pay for that access, and they did not have the ability to edit any incorrect information.
As electronic record systems became more popular and eventually universal in healthcare systems across the US, some medical facilities began partnering with health information technology companies to allow patients access to their health records through specialized online portals. By logging in through such a portal, a patient is typically able to access a number of important sections of his or her health records, including provider letters and reports, laboratory results, personal and demographic information, and lists of scheduled appointments. Advocates of these advances argue that having access to their health records enables patients to become more educated about their own health, communicate better with doctors, and identify errors or omissions in their records. Opponents of patient access to electronic health records, however, warn that the information contained in electronic health records may confuse or worry patients, prompting them to question their doctors' decisions or require lengthy explanations for each piece of data. Electronic availability of health records also raises concerns about patient privacy, particularly in light of concerns about the security of information stored online.
Understanding the Discussion
Electronic health records: Records regarding a patient's health and medical treatment that are stored, accessed, and updated digitally using a specialized computer program.
Health information technology: Forms of information technology--that is, computers and similar equipment used to store, analyze, and transmit data--used in the health care field.
Health Information Technology for Economic and Clinical Health (HITECH) Act: A 2009 law that promoted and established regulations for the use of health information technology.
Health Insurance Portability and Accountability Act (HIPAA): A 1996 law that introduced major reforms in the areas of health insurance, patient privacy and access, and electronic healthcare security.
Portal: A website through which patients can access portions of their health records.
History
Patient health records were long kept solely in paper form, as technological limitations made the use of other forms of storage impractical or impossible. Although patient records existed in physical form, typically within the medical facility, patients were largely unable to access their own medical records, as many doctors were opposed to sharing such information. While some state statutes stipulated that patients had the right to access their hospital records, facilities often failed to comply with such regulations, forcing determined patients to pursue legal action and obtain a court order to access their own files. Over time, various state and federal laws provided for the potential for more patient access. However, many medical practitioners remained reluctant to share records, arguing that the information contained in such records might cause patients to become confused or afraid and could thus undermine their medical care. Some in the medical field also argued that records were specifically the property of the individual doctor or facility rather than patient in question, although courts ultimately found that despite the ownership of the physical records, patients had the right to access vital medical information that concerned them.
The question of patient access was settled nationwide following the passage of the Health Insurance Portability and Accountability Act (HIPAA) of 1996. The act introduced a number of health care-related reforms, including many in the areas of health insurance and patient privacy. Title II of the act charged the secretary of the Health and Human Services Department with developing a number of regulations concerning the use and accessibility of health care information. One such regulation, known as the Privacy Rule, specifies that patients have the right to obtain copies of their health records and request that any inaccurate information be corrected. Most health insurance plans and health care providers were required to comply with those rules by mid-2003. Although federal regulations granted patients the ability to access their records, the process remained a time-consuming one, as obtaining a copy of one's record meant that each page, of which there were often many, needed to be copied. It could also be a costly process, as medical practitioners were legally permitted to charge fees, although the amounts were typically limited by the state in which the medical professionals practiced.
As medical practices began to switch from paper records to electronic ones, patients continued to request copies of their health records. The Health Information Technology for Economic and Clinical Health (HITECH) Act, title XIII of the American Recovery and Reinvestment Act of 2009, promoted the use of health information technology and offered incentives for its implementation and use. One major stipulation of the act was that a patient has the right to request a copy of his or her electronic health records. The act also stated that the fee for providing such information in electronic form could not exceed the labor costs incurred in fulfilling that request. Over time, electronic record systems began to offer patients direct access to portions of their records, typically through secure online portals.
Patient Access to Electronic Health Records Today
By the second decade of the twenty-first century, the use of electronic health record systems was relatively common among medical professionals. Many such systems enabled patients to access portions of their records at any time and from anywhere with an Internet connection. By logging in through a secure online portal, a patient enrolled in such a system may access a variety of medical information, such as reports from his or her recent appointments and results of laboratory tests. At times, patients may also have the ability to modify missing or incorrect personal information, such as addresses or phone numbers, or health information, such as allergies.
Supporters of this technology, along with many patients, consider it beneficial to both patients and medical professionals, arguing that patient access to electronic health records helps patients take responsibility for their own health and establish more productive relationships with practitioners. Others, however, have raised concerns about the effects of unlimited access on patients who are not medically educated and the various privacy concerns the use of Internet-accessible records presents. According to studies conducted within the medical field, many practitioners believe that patients should have access to some portions of their records; however, there is no consensus as to which sections of a patient's records should be off limits.
In December 2016 Congress passed a new law, the 21st Century Cures Act, which required all healthcare providers in the US to provide patients with free access to their online medical records. Under these new regulations, it became illegal for healthcare providers to block patients from accessing their online medical records; previously, some US healthcare providers had been criticized for making it expensive, time-consuming, or otherwise difficult for patients to access records pertaining to their own medical history. These laws went into effect in October 2022.
Bibliography
Ackerman, Kate. "Barriers Continue to Limit Patient Access to Electronic Health Data." iHealthBeat, Advisory Board, 27 Jan. 2012.
Hoffman, Sharona, and Andy Podgurski. "Finding a Cure: The Case for Regulation and Oversight of Electronic Health Record Systems." School of Law, Case Western Reserve University, 2009.
Making IT Meaningful: How Consumers Value and Trust Health IT. Natl. Partnership for Women and Families, 2012.
Murphy-Abdouch, Kim. "Patient Access to Personal Health Information: Regulation vs. Reality." Perspectives in Health Information Management, AHIMA Foundation, vol. 12, 2015.
"New Information Blocking Rules." American College of Surgeons, 6 Oct. 2022, www.facs.org/advocacy/regulatory-issues/advocacy-quality/new-information-blocking-rules/. Accessed 30 May 2024.
Ross, Casey. "Call it Data Liberation Day: Patients Can Now Access All Their Health Records Digitally." STAT, 6 Oct. 2022, www.statnews.com/2022/10/06/health-data-information-blocking-records/. Accessed 30 May 2024.
"21st Century Cures Act." US Food and Drug Administration, 31 Jan. 2020, www.fda.gov/regulatory-information/selected-amendments-fdc-act/21st-century-cures-act. Accessed 30 May 2024.