Patient Access to Electronic Health Records: Benefits and Drawbacks
One potential issue with patients accessing their EHRs is that they aren't able to comprehend the medical terminology.
Healthcare providers are increasingly offering patients access to their own electronic health records (EHR) via online portals. Nearly gone are the days when one had to wait for a phone call to learn test results, or go through several steps to reach the physician's office staff only to confirm basic details of their medical history or care. Instead, they can simply log on to a secure site and see for themselves. A number of recent studies have explored the benefits and potential problems of this open access model, as well as ways to overcome barriers associated with patients' use of these tools.
“Patients should have access to their own EHRs and test results to have a more comprehensive understanding of their medical conditions and treatment plan,” said Christoph Lee, MD, MSHS, an associate professor of radiology at the University of Washington, and co-author of a recent review on the topic as it pertains to the field of radiology.1 Such access offers multiple advantages in addition to convenience, including enhanced appreciation of the extent of their condition and of the reasoning for their doctor's treatment decisions.
“Moreover, as seen in the OpenNotes demonstration, patients feel a greater level of empowerment and may contribute meaningfully to their own care,” Dr Lee told Infectious Disease Advisor.2 “Another benefit for the quality of care is that patients may find errors in their medical records, such as their past medical history or family history, which can lead to corrections and potentially prevent medical errors.”
There are also potential drawbacks and obstacles to consider, though these are generally outweighed by the many advantages of open access. “One potential pitfall is the fact that some patients may learn about their test results before their treating physicians, which may cause anxiety among patients who do not understand the implications of abnormal results and for physicians who may field communications directly from patients without being fully prepared,” Dr Lee explained. “However, this pitfall is likely trumped by the desire among patients for full transparency and real-time results communication.”
A number of factors influence patient adoption of such a system, including race and ethnicity, age, and socioeconomic status.3 Noting previous findings that racial and ethnic minority patients access their healthcare information online compared to non-Hispanic white patients, a qualitative study published in October 2016 by researchers at the University of California, San Francisco, investigated reasons for this difference.4 They conducted focus groups with patients who were part of a large healthcare system that had adopted portal use more than a decade earlier.
Their findings show that the key barriers to patient use cited by African American and Latino patients were lack of technical support and fear of a diminished relationship with their healthcare provider. “This differential portal use could be problematic for health care disparities since early evidence links portal use to better outcomes,” and as more healthcare systems adopt their use, wrote the authors.
A 2015 review found related improvements in disease self-management, fewer office visits, and an increase in preventative medicine, while another study by UCSF researchers showed an increase in medication adherence among patients with diabetes who refilled medications through an online portal.5,6 The authors suggest that more widespread use in diverse patient groups may require more user-friendly and personalized portals.
According to a review by experts at the University of Pittsburgh, patients under the age of 35 and those with a lower level of education were also less likely to use patient portals, while those who often use healthcare services, have disabilities or chronic disease, or care for elderly parents or children use portals more frequently.3 In addition to the importance of ease of use, provider acceptance and promotion, and perceived privacy of the portal system are important factors associated with increased adoption by patients.
Even when patients do access their electronic records through patient portals, language may present another barrier to their meaningful use. “One potential obstacle for patients is that they often don't have enough knowledge to fully comprehend these notes, since they were written by physicians using medical terminology, mainly for recording purposes and for transferring information among physicians,” said Jinying Chen, a postdoctoral research scientist in the Department of Quantitative Health Sciences at University of Massachusetts Medical School.
"This brings up an important research topic–whether and how we can use information technologies, such as natural language processing, to help fill this knowledge gap and facilitate patients in EHR comprehension,” she told Infectious Disease Advisor. In a recent study published in JMIR Medical Informatics, Ms. Chen and colleagues examined the use of a natural language processing system they developed for this purpose.7
While previous research has explored translating medical terminology into lay terms, Ms. Chen's study takes it a step further with the “patient-centered approach of using natural language processing methods to find important medical terms in EHR notes for individual patients,” she said. “These terms can then be used to reduce information overload and help patients focus on the important content of their notes first, and to retrieve targeted educational materials for individual patients.” Chen and co-author Hong Yu, PhD, are further investigating this model in a research project aimed at helping veterans comprehend EHR notes, which is supported by the US Department of Veteran Affairs.
Direct patient access to electronic medical records offers a host of benefits and few drawbacks. Continuing to refine usability, personalization, and comprehension will ensure increased access to diverse patient groups.
- Lee CI, Langlotz CP, Elmore JG. Implications of direct patient online access to radiology reports through patient web portals. J Am Coll Radiol. 2016; 13(12 Pt B):1608-1614. doi: 10.1016/j.jacr.2016.09.007
- Walker J, Leveille SG, Ngo L, et al. Inviting patients to read their doctors' notes: patients and doctors look ahead. Ann Intern Med. 2011; 155:811-819. doi: 10.7326/0003-4819-155-12-201112200-00003
- Irizarry T, DeVito Dabbs AD, Curran CR. Patient portals and patient engagement: a state of the science review. J Med Internet Res. 2015;17:e148. doi: 10.2196/jmir.4255
- Lyles CR, Allen JY, Poole D, Tieu L, Kanter MH, Garrido T. "I want to keep the personal relationship with my doctor": understanding barriers to portal use among African Americans and Latinos. J Med Internet Res. 2016;18:e263. doi: 10.2196/jmir.5910
- Kruse CS, Bolton K, Freriks G. The effect of patient portals on quality outcomes and its implications to meaningful use: a systematic review. J Med Internet Res. 2015;17:e44. doi: 10.2196/jmir.3171
- Lyles CR, Sarkar U, Schillinger D, et al. Refilling medications through an online patient portal: consistent improvements in adherence across racial/ethnic groups. J Am Med Inform Assoc. 2016; 23:e28-33. doi: 10.1093/jamia/ocv126
- Chen J, Zheng J, Yu H. Finding important terms for patients in their electronic health records: a learning-to-rank approach using expert annotations. JMIR Med Inform. 2016; 4:e40. doi: 10.2196/medinform.6373