A recent ONC-led study found that most patients now view their test results in a web- or app-based patient portal before speaking with their healthcare provider. Yet among those who reviewed their results early, only 66% said they understood what the results meant and how it might impact their care. Despite the widespread use of patient portals to deliver electronic health information (EHI), just 28% of all patients and 33% of patient portal users reported being given the chance to indicate how and when they wanted to receive their results.
These findings, published in the Journal of Medical Internet Research (JMIR), were part of an analysis of responses from the 2024 Health Information National Trends Survey (HINTS), a nationally representative survey that collects data on the American public’s knowledge and use of health information.
ONC’s regulations implementing the 21st Century Cures Act’s information blocking provisions have been in effect since April 5, 2021. Information blocking addresses practices that materially discourage, prohibit, or interfere with the access, exchange, or use of EHI. This often means that a patient would be able to access their test results at the same time those results become available to the ordering healthcare provider. Prior studies found that 96% of patients prefer having immediate access to their test results, even if that means reviewing results before speaking with a clinician. However, some patients may prefer the delayed release of some sensitive or potentially life-changing results until they are contacted by their healthcare provider.
Some states have laws requiring specific approaches or delays in the release of life-altering diagnostic results, such as a new diagnosis of cancer, due to concerns over potential for some patients’ well-being to be affected by how and when they receive such news. Information blocking regulations accommodate healthcare providers’ following these laws. And information blocking rules also allow for patient preferences to be honored when it comes to release of any of their data. We have stated that granting a patient’s request to delay the release of test results is not likely to implicate information blocking, but our study finds that patients are rarely given the option to decide how and when test results will be communicated. Many electronic health record (EHR) systems currently lack built-in functionality to capture and subsequently honor individual patient preferences. Aligning information delivery with individual preferences often requires technical configurations and potential EHR workflow changes. Rather than taking that approach, many healthcare organizations automatically release all test results to the patient portal as they become available or, where applicable, immediately upon expiration of delay required by state law.
Delivering on a More Personalized Healthcare Experience
Despite certain technical limitations, there has been growing focus on ways to support patients while they await and review results. Many patient portals allow individuals to set preferences for how and when they receive notifications for new results. These settings commonly default to immediate alerts via email, text, or mobile app – regardless of the patient’s preference for when results are released. One organization disabled the default setting for immediate notifications and instead offered patients clear instructions on how to customize alerts within the portal’s existing technical constraints.
Incorporating patient preferences into the test result release and review process does not always require changes to technical infrastructure. Non-technical approaches, such as preparing patients in advance for what their test results may show and what follow-up to expect, can play a valuable role in the interim. Discussing the purpose of the test, potential findings, and expectations in plain language for follow-up has been shown to reduce worry when results are later accessed via the patient portal before discussing with a healthcare provider. These conversations also create an opportunity for patients to express how they would prefer to receive their results. In some organizations, providers can act on these preferences using EHR workflows that allow them to delay result release per patient request, ensuring that patients who wish to hear directly from their provider have the chance to do so before viewing the result online.
Patient preferences and needs related to test results are highly individualized and often complex. Emerging research aims to identify and tailor support strategies to better align with patient preferences and experiences. One study found that patients repeatedly refresh their patient portal – often more than 16 times – while awaiting new results. This behavior, a potential proxy for patient worry, did not correlate with specific test types but instead reflected individual attitudes and preferences. Leveraging real-time indicators like repeated refreshing could help health systems proactively identify patients who may benefit from additional support, potentially improving patient experience and reducing the volume of anxious messages or follow-up requests.
Helping patients better understand and contextualize their results is a critical opportunity for personalized support. Research shows that more than half of patients seek additional information to help interpret their results, suggesting there are unmet needs in current result release practices. While many patient portals have long offered education materials, these resources have traditionally been housed separately from test results and often require additional navigation to access. To address this, some healthcare organizations have begun embedding patient-friendly descriptions and basic educational content directly alongside new test results. These materials aim to address common information needs using verified, plain language that’s easily understood.
Emerging innovations in generative artificial intelligence (AI), including AI-enabled health applications that allow patients to securely upload their test results for further analysis and interpretation, may help increase the availability of personalized resources without adding work for providers. Early efforts suggest that AI could tailor educational content to an individual’s health literacy or respond directly to patient questions about their test results. Combined with the growing availability of contextual data – such as from ambient clinical recordings, visit summaries, and other clinical documentation – these tools may offer new ways to situate test results within the broader scope of the patient’s health journey.
The shift toward immediate digital access to health information has brought both new opportunities and new challenges for supporting patients and engaging them in their care. As health systems continue to refine how test results are delivered and supported, there is a need to move beyond one-size-fits-all approaches. Our findings suggest there is a growing opportunity for EHR developers to implement or expand capabilities that make it easy for organizations to enable their patients to set preferences around test results release. By integrating patient preferences, anticipating emotional responses, and leveraging both human and technical supports, organizations can create more responsive and patient-centered experiences. In doing so, sharing test results can become not just a regulatory requirement, but a meaningful point of engagement in a patient’s care.
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