Barriers to Accessing Online Medical Records in the United States

ABSTRACT

Objectives: Patients’ access to and use of online medical records (OMRs) can facilitate better management of their health and health care. However, health care disparities continue to exist. This study aimed to (1) determine the prevalence and predictors of individuals being offered access to OMRs, (2) identify predictors of individuals accessing their OMR, and (3) describe barriers to accessing one’s OMR.

Study Design: Secondary analyses of cross-sectional data from Health Information National Trends Survey 5, cycles 1 and 2 (n = 6670).

Methods: Multivariable logistic regression analyses were used to examine the association between sociodemographic and health care–related factors on being offered access to OMRs, accessing OMRs, and cited reasons for not accessing OMRs.

Results: In 2017-2018, 54% of US adults reported having been offered access to OMRs, and among those offered, 57% reported accessing their records. The groups who were less likely to be offered OMRs included men, middle-aged adults, members of racial/ethnic minority groups, individuals with lower education and household incomes, those who do not use the internet, and those living in rural areas. Respondents who were less likely to access their OMRs despite being offered included individuals with lower education and household incomes and rural residents. Among the 43% who did not access their records, the primary reason for not accessing was their preference to speak to their provider directly.

Conclusions: Sociodemographic and health care–related factors are associated with variation in use of OMRs. To realize the intended value of OMR use for patients, it is important to address barriers to OMR access and integrate OMRs into patient-provider communication and clinical care.

Am J Manag Care. 2021;27(1):33-40. https://doi.org/10.37765/ajmc.2021.88575

Takeaway Points

Health disparities among patients continue to exist despite innovative technologies such as online medical records (OMRs). Understanding which populations are less likely to access their OMRs, and why, is vital for improving patient-centered care.

• Men, middle-aged adults, members of racial/ethnic minority groups, individuals with lower education and household incomes, those who do not use the internet, and those living in rural areas were among those less likely to be offered OMRs. Individuals with lower education and household incomes and rural residents were less likely to access their OMRs despite being offered.
• Among the 43% who did not access their records, the primary reason for not accessing was their preference to speak to their provider directly.

Online medical records (OMRs), sometimes referred to as patient portals, facilitate patients’ access to their health records through secure online platforms and provide individuals with the capability to view, download, and transmit their patient health information.¹ Patient access and utilization of OMRs, in coordination with patient-centered care² and effective patient-provider communication,³ may contribute to enhanced health care interactions and may improve outcomes.⁴ Specifically, access to patient portals has been shown to increase patient engagement with their providers, treatment adherence, and overall quality of care.^5-7

As the world continues to confront the challenges brought on by the coronavirus disease 2019 (COVID-19) pandemic, routine in-person clinical visits have been upended due to concerns of virus transmission in health care settings. Hospitals are turning to health technology, such as OMRs, to facilitate communication among providers and patients.⁸ The efforts to increase access to OMRs began when the CMS Electronic Health Record (EHR) Incentive Programs required participating providers and hospitals to use certified EHR technology that could give individuals the ability to access, download, and share their electronic health information.⁹ Over time, access to OMRs has steadily increased, given the requirement. In 2017, approximately 80% of office-based providers were equipped with a certified EHR system in their practice.¹⁰ Furthermore, nearly all hospitals provided patients with the ability to electronically view and download their health information.¹¹ As providers continue to extend the ability to access online health information, patients’ access to OMRs increased by almost one-fourth between 2014 and 2017. An estimated half of US adults who visited a health care provider in 2017 were offered access to their OMR.¹ This estimate also suggests that almost half of Americans were not offered access even though OMRs were being adopted by the health care system. Despite the efforts to promote health information technologies, there are multiple barriers to OMR uptake in the United States,¹² and disparities in access to use further contribute to the “digital divide.”^13,14 These access disparities in many ways mirror disparities in health outcomes, including COVID-19 outcomes, across the populations.¹⁵

Although OMRs are intended as a simple and easily accessible digital form of accessing and tracking one’s medical information, obstacles to optimal use continue to exist, especially for patients with multiple medical conditions.¹⁶ For example, providers across different specialties do not use the same platforms and consequently patients are required to log in to multiple portals to access their records. Furthermore, disparities have been observed, with disadvantaged populations being less likely to be offered and to subsequently access their OMRs,¹⁷ resulting in low individual-level engagement with medical portals among minority populations.¹⁸ In addition, differential acceptance of this technology may exacerbate disparities in health outcomes.¹⁹ Evidence points to disparities in OMR uptake, access, and use among racial/ethnic minorities,^17,20,21 lower-educated populations,^17,21 and lower-income individuals.¹³

Moreover, patients and providers have varying attitudes and perceptions about online medical portals.²² Some patients do not perceive the portal as user-friendly because of difficulty navigating portals due to a lack of technical support, education, or reliable internet access.^23,24 Some providers view OMRs as having the potential to improve communication and enhance information sharing; however, they also express concerns related to OMRs generating more work, confusing patients, and increasing health disparities.²⁵ Further examination of this variation in practice is a priority in health care.²⁶ To bridge the digital divide, up-to-date knowledge of the demographic factors affecting OMR access and use is critical. This knowledge is the first step toward identifying access barriers and creating more equitable and patient-centered use of OMR across the United States.

The goals of this study were to use a nationally representative survey to examine the sociodemographic and health care–related factors that predict individuals’ self-reported access and use of OMRs. This study builds upon previous research on OMR access and use¹⁷ and adds to the literature by citing the primary self-reported reasons for those offered OMRs to not access their records, as well as sociodemographic factors predicting these cited barriers to access. The research questions of interest are (1) What are the sociodemographic and health care–related predictors of being offered OMRs in 2017-2018 among US adults?; (2) What are the sociodemographic and health care–related predictors of accessing OMRs over the last year?; and (3) Among those US adults who were offered OMRs but never accessed their records, what are the most commonly cited barriers to OMR access and what sociodemographic and health care–related characteristics predict each of the cited barriers?

METHODS

Design

The Health Information National Trends Survey (HINTS) is a nationally representative survey of individuals’ access to and use of health-related information; HINTS is conducted by the National Cancer Institute. To obtain a robust sample size, data from HINTS 5 cycles 1 and 2 were merged into 1 data set; cycle 1 was administered to 3285 adults and cycle 2 was administered to 3504 adults during the period of January to May in 2017 and 2018, respectively. The overall response rates for cycle 1 and cycle 2 were 32.4% and 32.9%, respectively. The sampling frame included all nonvacant residential addresses in the United States. Administration of the surveys was approved by the Westat Institutional Review Board and deemed exempt by the National Institutes of Health Office of Human Subjects Research. Additional information about survey design, weighting estimates, and population-specific response rates is available on the HINTS website.²⁷

Measures

Standard sociodemographic variables were included as predictor variables: gender (male, female), age (18-34, 35-46, 47-64, ≥ 65 years), race/ethnicity (non-Hispanic [NH] White, NH Black, NH Asian, NH other, Hispanic), education (less than a high school education, high school graduate and some college, college degree and higher), household income (≤ $34,999, $35,000-$74,999, ≥ $75,000), internet use (yes, no), and geographic location (rural, urban). Health care–related variables were also included as predictors: health insurance status (yes, no), frequency of doctor visit in the past year (never saw doctor, saw doctor at least once), and chronic condition status (none; have at least 1 of the following chronic conditions: diabetes, hypertension, heart condition, lung disease, arthritis, depression, and/or cancer).

The outcome variables of interest were associated with each of the research questions. Participants were asked (1) “Have you ever been offered online access to your medical records by your health care provider or health insurer?” (response options included a check box to indicate yes or no) and (2) “How many times did you access your online medical record in the past 12 months?” Response options were dichotomized into 0 times and at least 1 time. Those who answered 0 times were asked (3) “Why have you not accessed your medical record? Is it because…” and the specific reasons given were (1) “you prefer to speak to your health care provider directly?”; (2) “you do not have a way to access the website?”; (3) “you did not have a need to use your online medical record?”; and (4) “you were concerned about the privacy or security of the website that had your medical records?” The response options for the 4 items included separate check boxes to indicate yes or no. HINTS listed these specific barriers independently; therefore, participants had the opportunity to mark each item separately.

Analysis

Frequencies were calculated to describe the study sample and weighted prevalence for the self-reported account of being offered and accessing one’s OMR. Multivariable logistic regression models estimated associations among sociodemographic and health care–related factors, being offered OMR, accessing OMR, and reasons for not accessing OMR, in separate models. Each separate regression model controlled for all sociodemographic and health care variables, including gender, age, race/ethnicity, education, income, geographical location, health insurance status, frequency of provider visits, internet use, and chronic condition status. All analyses were conducted in SAS version 9.3 (SAS Institute) using survey weighting procedures with jackknife replicate weights to account for the complex survey design.

RESULTS

The merged HINTS data sets yielded a sample of 6789 respondents. As presented in Table 1, the majority of respondents were NH White (65%), followed by Hispanic (16%) and NH Black (11%). About 32% of the sample had not graduated from high school. Approximately 30% reported an annual household income of $35,000 or less, and most (86%) resided in urban areas. In addition, most individuals (82%) were internet users. Nearly all respondents (92%) reported having health care coverage, 82% had seen a health care provider in the past year, and 64% had at least 1 chronic condition. Based on the weighted data, results suggest that approximately 54% of US adults have been offered OMRs, and among those offered, 57% accessed their online records in the past year (eAppendix A [eAppendices available at ajmc.com]).

The multivariable logistic regression model identified several significant sociodemographic and health care–related predictors of being offered OMRs (Table 2 offers the adjusted and unadjusted results). The groups who were less likely to be offered OMRs included men, middle-aged adults, members of racial/ethnic minority groups, individuals with lower education levels and household incomes, those who did not use the internet, and those living in rural areas. Health care–related characteristics of respondents who were less likely to be offered OMRs included being uninsured, not visiting a provider in the past year, and having no chronic conditions.

We further examined predictors of accessing OMRs among those who were offered them. As shown in Table 3, similar patterns of disparities among sociodemographic and health care–related characteristics emerged. Respondents who were less likely to access their online records, despite being offered them, included individuals with lower education and household incomes, those who did not use the internet, and rural residents. Health care–related characteristics of respondents who were less likely to access their online records included not visiting a provider in the past year and having no chronic conditions.

Lastly, respondents were asked to select the barriers that prevented them from accessing their OMR from a predetermined list. Among the 43% of adults who did not access their records, the primary reasons for not accessing their records were (1) preference to speak to a provider directly (74%), (2) perceived lack of need to use OMR (62%), (3) concerns about privacy/security of the website (20%), and (4) having no way to access the website (15%) (Figure). Results of the multivariable logistic regression identified several significant sociodemographic and health care–related predictors of the specific reasons that individuals did not access their OMRs in the past year (Table 4; eAppendix B). Respondents who were more likely to cite that they preferred to speak to a provider directly as a reason for not accessing OMRs included those who visited a provider in the past year and those with chronic conditions. Respondents with higher levels of education were more likely to cite perceived lack of need to use an OMR. Older individuals were more likely to cite that they were concerned about privacy as a reason for not accessing OMRs. Lastly, the groups who were more likely to cite that they do not have a way to access the website included older adults, those with lower household incomes, and self-identified NH Asian individuals.

DISCUSSION

This study estimated that in 2018, 54% of US adults reported having been offered OMRs, and among those offered, 57% reported accessing their records at least once. Consistent with previous research, we found that age, educational attainment, income, and internet use were the most salient predictors of whether individuals were offered online portals, and even among those offered access, these same factors predicted their actual access and use of OMRs.^28-30 In addition, racial/ethnic minorities, residents of communities without broadband internet access, and lower-income individuals continue to have less access to digital health information technologies, further contributing to the digital divide and suggesting that those who might benefit the most from OMRs may be the least able to use them.³¹ Lastly, our findings elucidated specific disparities as to why some people did not access their OMR, addressing specific reasons that individuals perceive as barriers to utilizing OMRs.

Optimizing clinical communication between patients and health care professionals during office visits, encouraging health care professionals (eg, providers, nurses) to recommend use of OMRs to patients, and increasing patient education about OMR use are critical steps toward making OMR use preferred by patients. We found that nearly three-fourths (74%) of those who did not access their OMR within the past year—despite it being offered—cited that they preferred to speak to their provider directly. This suggests possible implicit fear or worry that technology might replace clinical communication and relationships with their providers. In fact, these concerns were echoed in a study that suggested that personal connection with one’s provider is a driving factor for not accessing one’s OMR, stating that patients’ disinterest in OMR use was linked to fear of losing their relationship with the provider.³² Given the shifting health care landscape due to COVID-19 and the increased reliance on virtual health care visits (ie, telemedicine), some of these concerns about the patient-provider relationship are currently being challenged; therefore, supplementing virtual patient-provider communication with optimal use of OMRs is critical.³³ As telehealth becomes more accepted, strategies must be developed to engage patients who prefer speaking directly with their providers. Simply offering these patients OMR access may not be enough, but further support from providers explaining the benefits of OMRs is needed.

Online portal access is meant to be a tool that supplements patients’ health care needs and supports conversations with providers; however, it may be perceived as potentially replacing the interpersonal interactions. This perception needs to be dispelled, both by reassuring patients that OMR use will not jeopardize their chance to speak with their providers and by continuing to support efforts to improve patient-provider communication. Provider recommendation for OMR use and improved education for patients about OMRs’ benefits may help increase OMR adoption, improve patients’ self-efficacy, and reduce communication barriers.^1,19,34 Lastly, patients’ direct contact with providers is and will remain an important part of a long-term therapeutic approach in disease management. Increased education and opportunity for patients to have low-barrier OMR access are vital for them to both accept health information technologies and benefit meaningfully from these technologies for disease management.^35,36

Our findings also show that among individuals who were offered but did not access their OMR, more than 60% perceived a lack of need for an OMR. Specifically, individuals with higher levels of education were more likely to perceive a lack of need for OMRs. Interestingly, this finding suggests a potential disconnect between the health care system that encourages meaningful OMR use and the individual patients who report the lack of need for such resources.³⁷ Even highly educated individuals, who are more likely to be able to navigate electronic portals,³⁸ may not see the utility of OMRs. The discordance between the health care system encouraging adoption of OMRs and patients’ perceived lack of need suggests that improving patient education and redesigning OMRs so that they are more streamlined and improve the user experience would help to decrease challenges in utilizing the platform, thus reducing any burden.³⁹

Concerns about privacy protection of online medical data also limit the use of OMRs.^40,41 Our findings indicate older adults were more likely to have concerns about the privacy of OMRs, suggesting that providers should work toward addressing and communicating the concerns related to data responsibility and confidentiality of information on the portals.⁴² Addressing these concerns while also offering alternative means of communicating may alleviate older patients’ hesitation and lack of trust in OMRs.^43,44 Finally, 15% of those who were offered access but chose not to access their records cited having no way of accessing the website. Consistent with the literature, older adults, minorities, and lower-income individuals were more likely to cite lack of computer or internet access as a reason for lack of OMR interest.^30,31 Enabling equitable broadband and technology access for all remains a priority toward improving equity in OMR access.

Policy Implications

Understanding sociodemographic and health care–related factors is only the first step to addressing disparities and achieving equity in OMR access and use. Addressing system-level barriers is a vital next step to address why those who are being offered OMRs are not utilizing the platform. Streamlining and easing the process to access one’s OMR so that individuals with multiple providers can access their electronic health information through a single online platform could help reduce the burden on the patient.

The 21st Century Cures Act of 2016 calls for expanding the use of standards-based application programming interfaces, a technology that allows mobile health apps to interact with patient portals across multiple care settings and securely aggregate a patient’s information into a centralized location.^45,46 This will allow individuals to more easily access their data through health apps, which may better help patients manage their medical conditions and empower them to share information with providers. Furthermore, CMS has launched an initiative known as MyHealthEData to further patient access to their health information.⁴⁷ CMS has provided electronic access to Medicare claims information for patients and is taking steps to prioritize patient access and use. However, further research is needed to understand the potential impact of this technology on disparities in OMR access and use.

Health care professionals play an important role in promoting the access of OMR among their patients. Whenever offering patients OMRs, providers should consider factors beyond demographic characteristics, which may not accurately reflect patients’ health literacy or technological preferences, and directly address patients’ concerns for OMR use and assess their understanding of OMR benefits.⁴⁸ Additionally, educational efforts should consider using plain language and include simple action steps to accessing the OMR.⁴⁹ Given the COVID-19 pandemic, it has become critically important to understand patients’ attitudes and concerns about telehealth to increase patient-centered care.

Limitations

Limitations of this study include the use of cross-sectional data based on participants’ self-report; therefore, causal relationships could not be ascertained and certain items, such as participants’ recall of OMR access and use, should be considered with caveats. Actual offer and access of OMRs were not measured. Lastly, the survey response rate was lower for racial/ethnic minorities and younger age groups, which may limit generalizability; however, this concern may be mitigated by weighting of the data to US population estimates.²⁷

CONCLUSIONS

To effectively address the barriers that patients face in accessing OMRs, both individual- and system-level improvements must be implemented. Future research should develop and test strategies for tailoring patient portal usability for diverse populations to narrow the digital divide and improve equitable access. Streamlining the online interface by incorporating patient-centered design and allowing interoperability among providers so patients can access primary and specialty care records seamlessly may help improve meaningful OMR use and lower communication barriers.

Author Affiliations: Health Communication and Informatics Research Branch, Behavioral Research Program, National Cancer Institute (NT, WSC), Bethesda, MD; Office of the National Coordinator for Health IT (VP, CJ), Washington, DC.

Source of Funding: None.

Author Disclosures: The authors report no relationship or financial interest with any entity that would pose a conflict of interest with the subject matter of this article.

Authorship Information: Concept and design (NT, VP, CJ, WSC); analysis and interpretation of data (NT, VP, CJ, WSC); drafting of the manuscript (NT, WSC); critical revision of the manuscript for important intellectual content (NT, VP, CJ, WSC); statistical analysis (NT); administrative, technical, or logistic support (NT, WSC); and supervision (VP, WSC).

Address Correspondence to: Neha Trivedi, PhD, MPH, Health Communication and Informatics Research Branch, Behavioral Research Program, National Cancer Institute, 9609 Medical Center Dr, 3E624, Bethesda, MD 20892. Email: neha.trivedi@nih.gov.

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