The release of clinical information under the 21st century cures act and implications for patients with cancer: a narrative review

Introduction

The 21st Century Cures Act, enacted as bipartisan legislation on December 13, 2016, represents one of the most significant U.S. health policy reforms of the past decade aimed at accelerating medical innovation, enhancing interoperability of health information technology, and empowering patients through greater access to their health data (1). A core component of the Act addresses information blocking, the practice by which healthcare clinicians, health information technology developers, or health information exchanges unreasonably interfere with the access, exchange, or use of electronic health information (EHI) (1). To implement this provision, the Office of the National Coordinator (ONC) for Health Information Technology issued the Information Blocking Rule, which took effect on April 5, 2021 (1). This rule prohibits delays in releasing EHI to patients, effectively requiring electronic access to a broad range of clinical data, including test results (e.g., laboratory values, imaging reports, and pathology findings), progress notes, consultation notes, and other elements of the United States Core Data for Interoperability (USCDI) (1).

The primary goals of the Information Blocking Rule were to promote patient-centered care, foster transparency, improve care coordination, and enable individuals to engage more actively in decision-making about their health (1). By shifting from traditional delayed or clinician-mediated release of results to default electronic patient access via online portals, the rule builds on earlier initiatives, such as “Open Notes” while enforcing stricter compliance through potential penalties for non-adherent actors (2). Proponents espoused that these changes democratized health information, reduced informational asymmetries, and supported better-informed patients (3). However, in high-stakes clinical contexts, including oncology, implementation of this policy has been associated with concerns, among both patients and clinicians, about potential psychological distress and impacts on patient-clinician communication.

Patients with cancer often engage with the healthcare system intensively and repeatedly over extended periods. Through this sustained engagement, many develop familiarity with the meaning and limitations of test results and with the rhythms of oncology care. This accumulated experience may mitigate distress for some patients, even in the context of high-stakes findings, and suggests that responses to access result release are heterogeneous rather than uniformly harmful in advanced disease. Notably, patients with advanced, incurable cancer often undergo more frequent monitoring, including serial imaging, tumor marker assessment, and molecular profiling, with results carrying considerable prognostic significance (4). In this context, test results may signal disease progression, treatment failure, or the need to reconsider treatment options and are commonly accompanied by substantial emotional burden (5-11). Accessing complex clinical reports without timely clinician context may exacerbate anxiety, contribute to misinterpretation of complex findings, prompt unfiltered information-seeking, or strain patient-clinician relationships (12,13). Oncology clinicians, in turn, report concerns about increased patient distress, higher volumes of urgent inquiries, workflow disruptions, and challenges in delivering serious news when patients have already accessed results independently (3,12). These issues arise in the context of advanced cancer care, where prognostic information is recurrent and where symptom management, psychosocial support, and treatment decision-making occur concurrently.

Despite the policy’s broad implementation and the potential implications for oncology, empirical evidence specific to the 21st Century Cures Act’s impact remains limited, especially for patients with cancer. Thus, we conducted a narrative review to synthesize the available literature on the impact of access clinical information under the 21st Century Cures Act, with a focused lens on patients with cancer. We sought to examine key perspectives from both patients and clinicians, including outcomes such as anxiety, empowerment, satisfaction with care, communication quality, and workflow effects. Some of the studies cited above are further examined in the narrative synthesis below. We present this article in accordance with the Narrative Review reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-2026-1-0023/rc).

Methods

This narrative review was conducted in accordance with the Scale for the Assessment of Narrative Review Articles (SANRA), a validated framework to enhance the quality and of non-systematic literature reviews (14). Consistent with SANRA principles, the review was guided by clearly defined aims, a transparent literature search strategy, appropriate citation of key sources, and a balanced, reasoned synthesis of available evidence (Narrative Review Checklist).

Literature search strategy (Table 1)

A comprehensive, non-systematic literature search was conducted for studies published between January 2021 and December 2025, corresponding to the period following implementation of the Information Blocking Rule under the 21st Century Cures Act (effective April 2021). Earlier publications (from 2016 onward, the year of Act enactment) were considered selectively when directly relevant to provide policy or conceptual context. The primary database searched was PubMed/MEDLINE, supplemented by targeted searches in Google Scholar to capture interdisciplinary perspectives, including health policy, psycho-oncology, health services research, and patient-reported outcomes. Additional sources were identified through manual review of reference lists of relevant articles (snowballing), position statements and guidance from major oncology societies, and reports from the ONC for Health Information Technology.

Search terms combined policy-related concepts with oncology-specific terminology, using Boolean operators and variations of the following terms: (“21st Century Cures Act” OR “information blocking” OR “patient portal results” OR “access to test results”) AND (cancer OR oncology OR metastatic OR advanced OR palliative). While no strict date restrictions were applied beyond relevance to the post-2021 regulatory environment, priority was given to publications from 2016 onward (the year of Act enactment), with particular emphasis on studies published from 2021 to the present.

Eligibility criteria and study selection

Eligible sources included English-language, peer-reviewed articles encompassing qualitative studies, quantitative surveys, mixed-methods research, editorials, commentaries, and policy analyses that addressed the impact of timely EHI release in cancer care. The review prioritized studies explicitly involving adult patients with cancer and/or oncology clinicians caring for this population. Studies focused exclusively on pediatric, adolescent, or young adult (AYA) populations were excluded, given differences in developmental context, consent frameworks, caregiver involvement, and result disclosure practices. However, broader oncology literature was included when metastatic-specific data were limited or when findings were considered directly relevant or extrapolatable, such as studies examining high-stakes diagnostic information (e.g., imaging results, pathology reports, or tumor biomarkers).

Exclusion criteria included studies conducted exclusively outside oncology, pre-Cures Act open notes literature without explicit linkage to the current regulatory framework, non-empirical opinion pieces lacking data or substantive analysis, and gray literature unless issued by authoritative organizations [e.g., American Society of Clinical Oncology (ASCO) or ONC]. Studies that met topical relevance but did not provide empirical data or substantive analysis were excluded during full-text review.

Study selection was guided by relevance to the review’s objectives, including synthesis of patient and clinician perspectives, outcomes (e.g., anxiety, empowerment, satisfaction with care, communication quality), implementation challenges, and implications for workflow and clinical practice in advanced cancer care. Commentaries, editorials, and policy analyses were included primarily to contextualize empirical findings and were not interpreted as equivalent sources of evidence.

Titles and abstracts were screened for relevance, followed by full-text review where appropriate. Studies were included based on their alignment with predefined eligibility criteria and their contribution to key thematic areas of the review. Both empirical and non-empirical sources were considered; however, non-empirical sources were used to contextualize findings rather than as primary evidence. Consistent with the narrative review approach, formal quality appraisal was not performed; instead, studies were assessed for relevance, methodological approach, and contribution to the synthesis.

Data synthesis

We conducted a narrative synthesis rather than formal systematic review, given the emerging, heterogeneous, and methodologically diverse nature of the literature, methods, meta-analysis, or structured data extraction. Included studies were appraised informally for methodological rigor, clarity, and relevance to the review objectives. Findings were synthesized thematically, with attention to areas of convergence and divergence across patient and clinician perspectives, and to contextual factors unique to metastatic cancer care. This approach enabled comprehensive examination of an evolving policy landscape while acknowledging limitations related to the quantity, design, and consistency of available evidence.

As this is a narrative review, the synthesis and interpretation of the literature are informed by the perspectives of the author team. The authors represent a multidisciplinary group, including expertise in psychology/psycho-oncology, palliative care, medical oncology, hematology-oncology, and patient advocacy. These diverse perspectives were intentionally integrated to support a balanced and patient-centered interpretation of the evidence.

Results

Overview of the evidence base

The literature examining the impact of mandated patient access to EHI under the 21st Century Cures Act Information Blocking Rule in oncology remains limited and heterogeneous. Across searches of PubMed and Google Scholar, 295 records were identified (Figure 1). After review for relevance, 275 records were excluded, including studies focused on pediatric or adolescent populations (n=36), non-cancer populations (n=52), and publications not directly addressing the impact of EHI release on cancer care (n=187). We included 20 peer-reviewed articles and commentaries in the final narrative synthesis. Included sources comprised both empirical studies (e.g., surveys, retrospective analyses, qualitative and mixed-methods studies) and non-empirical articles (e.g., commentaries and policy analyses), the latter used primarily to contextualize findings. These publications were primarily published between 2021 and 2025 and directly addressed cancer care in the context of patient access to test results via electronic portals. Only one study explicitly focused on patients with metastatic cancer (15).

Figure 1 PRISMA-style flow diagram (adapted for a narrative review). EHI, electronic health information.

Available evidence derived predominantly from observational and descriptive designs, conducted largely in academic health systems (Table 2) (16-18). Several studies also examined high-stakes diagnostic results (e.g., radiology, pathology, or tumor markers), which are commonly encountered in oncology care and may be particularly relevant to contexts involving prognostically significant findings (19-21). No randomized or prospective interventional studies evaluating results release timing were identified.

Clinician perspectives and implementation challenges

Across empirical studies (primarily surveys and qualitative reports), oncology clinicians reported concerns about patients receiving test results before scheduled discussion (16,18,22). These concerns are further echoed in narrative and policy-oriented reports, although these sources do not provide direct empirical evidence (3,19). Survey-based studies and qualitative reports described clinician perceptions of potential increases in patient anxiety, patient inquiries, and workflow disruptions (16,22). However, findings were heterogeneous, with some studies reporting lower-than-anticipated distress and minimal changes in patient inquiries (22). Clinicians generally expressed a preference for having the opportunity to review and contextualize sensitive findings, such as radiographic or pathology results, prior to patient access (23,24). This perspective was primarily derived from survey data and qualitative reports, and further discussed in commentary and policy literature (23,24).

Some qualitative and survey-based studies described challenges in managing patient reactions to complex or ambiguous results accessed independently (22). In a survey of neuro-oncology clinicians, concerns were reported regarding patients viewing imaging or pathology results suggestive of progression prior to scheduled visits, including potential emotional distress and increased unscheduled communication (16). Some studies also suggested that clinicians may adapt over time as workflows evolve; however, concerns related to high-stakes results, documentation burden, and limited flexibility within the current regulatory framework have persisted in survey-based and commentary literature (3,16).

Patient experiences and patient-reported outcomes

In this review, patient perspectives were less frequently examined than clinician perspectives (n=9 vs. n=14 studies) (Table 2). Across studies, patients generally expressed support for timely access to their results, describing portal-based access as enhancing transparency, autonomy, and engagement with care (22,26,27). Many patients preferred immediate access, including for abnormal results, although preferences varied by context and test type (26). Some patients reported feeling more informed and better prepared for clinical encounters, particularly in studies assessing patient-reported experiences (e.g., surveys and qualitative interviews), rather than usage-based analyses which do not capture perceptions (22,26). At the same time, a subset of patients reported distress or confusion when encountering complex clinical information without follow-up (20,22,27).

Retrospective analyses demonstrated substantial shifts in patient behavior following implementation of non-delayed electronic release of test results. Median time from result availability to patient viewing decreased markedly, from weeks/days to hours, with a substantial proportion of patients accessing results prior to ordering clinician review (17). These studies, largely conducted in general patient populations, demonstrated high levels of engagement with patient portals and are likely relevant to oncology settings, where testing is frequent, although they were not exclusively oncology-specific cohorts (21,28,29). Some recent commentary and early reports suggest that patients may supplement portal-based information with external digital resources, to help interpret clinical results and prepare for follow-up discussions; however, empirical evidence on the prevalence, safety, and impact of these practices in oncology remains limited (33).

Preferences regarding timing and type of results

Across multiple studies, patient preferences regarding timing of result access were generally favorable toward timely release, including abnormal results (22,26). However, some studies and qualitative reports suggested that preferences may vary depending on the type and perceived severity of results, with greater uncertainty or concern expressed for complex findings such as imaging or pathology reports (20,22). Commentary and policy-oriented literature (non-empirical) further highlighted ongoing debate regarding whether certain high-stakes results may benefit from additional clinical context at the time of disclosure, although empirical patient preference data generally favor timely access, including for abnormal results (19).

Evidence for mitigation strategies

Few studies directly evaluated interventions designed to mitigate patient distress or clinician burden associated with non-delayed electronic result release (1,26,27). Most available evidence relates to proposed, descriptive or observational strategies rather than formally evaluated interventions. Pre-counseling or anticipatory guidance at the time of test ordering was frequently discussed in qualitative studies and policy/commentary literature, with limited empirical evidence evaluating its effectiveness, as a potential strategy to prepare patients for receiving results (1,26). However, empirical evidence supporting its effectiveness is limited. For example, survey data suggest that pre-counseling was not associated with lower levels of patient-reported worry, indicating that its impact may be variable (26). Other proposed strategies described in the literature include patient-friendly report formats, embedded educational resources, and improved communication workflows, although these approaches have not been rigorously evaluated in controlled studies (1,27).

Tiered or delayed release approaches for high-stakes results, such as radiology or pathology reports indicating malignancy or disease progression, have been discussed (29). However, no randomized or controlled studies directly compared delayed versus immediate release strategies with respect to patient anxiety, psychological outcomes, or clinician workload.

Equity and access considerations

Equity-related concerns were infrequently addressed in the oncology-specific literature. Studies conducted in broader patient populations (not specific to oncology or to the Information Blocking Rule) suggest that disparities in patient portal access and use may exist among older adults, individuals with limited digital health literacy, non-English speakers, and historically marginalized populations (30,31). While these findings are not specific to oncology or to the Information Blocking Rule, they highlight potential areas of concern for equitable implementation of patient-facing technologies in cancer care.

Implications for metastatic and advanced cancer care

Direct evidence specific to patients with advanced or metastatic cancer remains sparse. Only one identified study explicitly examined this population (15). Most available insights are derived from broader oncology populations or from studies examining high-stakes diagnostic testing (e.g., imaging or pathology), which are relevant but not specific to advanced disease. Survey-based studies, qualitative reports, and clinician commentaries suggest that challenges related to interpretation, emotional response, and communication may arise in context involving prognostically significant results; however, current evidence does not demonstrate that these effects are uniquely more pronounced in advanced cancer populations (3,16,22,23,28).

No randomized controlled trials were identified that directly compared timely versus delayed release of oncology test results for outcomes such as anxiety, quality of life, or clinician workload. While anecdotal reports described cases of significant distress following portal-based discovery of disease progression prior to clinician discussion, evidence from the broader “Open Notes” literature suggests potential gains in trust and satisfaction, highlighting the coexistence of strong preferences for transparency alongside variable emotional responses to results.

Additional evidence

A large, multisite survey of portal users across four U.S. academic medical centers found that most patients preferred timely access to test results via an online patient portal, including when results were viewed before clinician discussion. Although a subset of patients reported increased distress, the majority reported either no change or decreased worry, indicating that preference for timely access and emotional responses to results can coexist (26). These findings suggest that patient experiences are not uniformly positive or negative, but instead reflect a spectrum of responses shaped by individual, clinical, and contextual factors. Abnormal results were associated with higher patient-reported worry compared with normal results [pooled odds ratio (OR) 2.71; 99% confidence interval (CI): 1.96–3.74] (26). Although the study was not limited to patients with cancer, nearly 19% of respondents reported a cancer diagnosis, supporting the relevance of these findings to oncology populations. These results highlight variability in patient emotional responses to abnormal findings within the broader context of strong patient preference for timely access to test results.

Policy and practice considerations

Non-empirical narrative and policy-oriented articles in clinical radiology and informatics journals have situated expanded patient access to results within broader electronic health record (EHR) and patient portal implementation practices (2,13). These analyses describe how the Information Blocking Rule eliminated traditional delays in report release, such as embargoes on radiology reports, fundamentally altering disclosure workflows. They also noted that access to complex clinical information (e.g., imaging, pathology reports) without contemporaneous clinical discussion may pose interpretive challenges for some patients. In response, some reports described the implementation of mitigation strategies, including patient-friendly report formats, embedded definitions, and explanatory links within portals, as well as the emerging use of artificial intelligence (AI)-enabled tools to support patient understanding of test results (1,32,34). Policy discussions have emphasized the ethical and clinical importance of contextualizing serious or prognostically meaningful findings, drawing on earlier debates surrounding open access to imaging results and rare but serious adverse outcomes reported in the literature. Collectively, these non-empirical discussions suggest conceptual approaches, but do not constitute direct evidence of effectiveness or patient outcomes (35).

Discussion

In this narrative review, we synthesized the emerging literature on the impact of the 21st Century Cures Act Information Blocking Rule on oncology care, with attention to oncology care, including advanced disease contexts. Overall, the available evidence, largely observational and supplemented by policy and commentary literature, suggests that while timely access to EHI often aligns with patients’ preferences for transparency and engagement, some studies report potential challenges, including distress, misinterpretation, and workflow disruption, although findings are heterogeneous and not consistently observed across settings (3,16,22,26). These risks have been described across oncology settings and are frequently discussed in the context of cancer, where repeated testing and prognostically meaningful results are common. However, the heterogeneity in findings across studies suggests the need for a more structured approach to understanding when and why these outcomes occur.

To better integrate the heterogeneous findings, we propose a conceptual framework with three domains: (I) characteristics of result release (e.g., timing, type, and complexity of results); (II) patient- and context-level factors (e.g., clinical setting, prior disease experience, health literacy, and availability of support); and (III) downstream outcomes (e.g., emotional responses, engagement, and patient-clinician communication). Variation across studies may reflect differences in how these domains interact rather than conflicting evidence. For example, access to high-stakes results without clinical context may be associated with distress, whereas access to routine results or access with anticipatory guidance may support engagement and preparedness. This framework serves as a conceptual tool to organize current findings and highlights the need for studies examining how these factors influence patient and clinician experiences.

Consistent with prior studies in oncology and broader portal-based care, most patients value timely access to their clinical information and describe access to results as supporting autonomy and engagement (22,26,27). These findings mirror earlier Open Notes literature demonstrating increased patient engagement, trust, and perceived safety when individuals can review their medical information directly (24,36,37). However, the oncology-specific literature reviewed here highlights an important caveat, namely that preferences regarding the timing of result access are highly context-dependent (19,20,22). While patients generally favor timely access to routine laboratory tests, both patients and clinicians express concern regarding portal-based access to imaging, pathology, and biomarker results without contemporaneous clinical context, particularly when such results may signal disease progression or treatment failure (19,20,22). These findings underscore a general preference for rapid access, with some evidence of increased worry following abnormal or unexpected results, while overall patient responses remain variable and not uniformly negative (19,22,26).

Clinician perspectives across multiple studies (primarily surveys and qualitative reports) raised concerns about potential unintended consequences following implementation of the Information Blocking Rule, including heightened patient anxiety, increased volumes of urgent portal messages, and challenges to carefully planned disclosure conversations (3,16,22). However, empirical findings were mixed, with some studies reporting lower-than-anticipated patient distress and limited increases in patient-initiated contact. At the same time, studies also described potential benefits for patients, including having time to process results, formulate questions, seek additional information (e.g., about prognosis or clinical trials), and arrive at subsequent visits better prepared for discussion. In this context, qualitative reports suggest that independently accessing serious or ambiguous findings via patient portals can both facilitate patient preparedness and, for some individuals, complicate in-person discussions when distress or misinterpretation arises prior to clinical contextualization (16,22).

Importantly, direct evidence focused specifically on patients with metastatic cancer remains scarce. Only one identified study explicitly examined this population, underscoring a critical gap in the literature (15). Nevertheless, it is not yet established whether these challenges are more pronounced in advanced disease, although studies involving high-stakes oncology testing suggest that similar psychological and relational concerns may arise in contexts involving prognostically significant results (5-11). The absence of randomized or prospective studies comparing different approaches to result release limits definitive conclusions regarding best practices. Future research should prioritize feasible designs, such as observational comparisons and prospective evaluations of communication and support interventions, while assessing patient-centered outcomes, including anxiety, quality of life, satisfaction with communication, and clinician workload.

Several mitigation strategies emerged from the literature and expert consensus, although most are derived from qualitative or policy-oriented sources rather than empirically tested interventions. Anticipatory counseling at the time of test ordering has been discussed as a potential strategy, particularly for imaging or pathology with potential prognostic implications (1,26). Such approaches may help clinicians to set expectations, explain the purpose of testing, and discuss how and when results will be communicated. Shared decision-making around result release preferences, including explicit discussion of potential emotional impacts, has been proposed as a way to better align transparency with patient readiness (1,26). For some patients, particularly during periods of heightened vulnerability, delegating portal access to a trusted medical representative may offer an additional layer of emotional protection (1,23,24).

At the systems level, institutions may help by developing clearer disclosure and support strategies for high stakes results that operate within the regulatory flexibility permitted by the Cures Act. Blanket or wholesale delays in result release are generally inconsistent with information-blocking requirements and are therefore not a viable solution. Instead, targeted, compliant strategies, such as plain-language summaries, result-specific educational materials, AI-enabled explanations, and rapid follow-up communication pathways, may help support patient understanding and communication, although empirical evidence evaluating their impact remains limited (27,38). Enhanced integration of supportive care services, including oncology nursing, social work, palliative care, and digital decision-support tools, is particularly important in oncology, where emotional, informational, and decisional needs are closely intertwined (39).

Finally, this review highlights an important ethical consideration in timely result release: balancing respect for patient autonomy with the obligation to avoid harm. The distinction between truthful disclosure and uncontextualized information delivery is not merely semantic but ethical, emphasizing the clinician’s responsibility to deliver information with appropriate timing, context, and attention to the patient’s capacity to process complex and emotionally charged data (38,39). In the post-Cures Act era, optimizing disclosure in advanced cancer care will require not only regulatory compliance but also thoughtful, patient-centered communication strategies grounded in empirical evidence.

This review has several limitations. As a narrative review, we could not employ systematic review methodology or formal quality appraisal, and findings may be subject to selection and publication bias. The available literature is heterogeneous and largely observational, with a predominance of cross-sectional surveys, qualitative studies, and single-institution reports. In addition, most studies were authored by healthcare professionals and relied on clinician surveys, interviews, or interpretations of patient behavior, whereas patients rarely served as primary authors. This structural imbalance may bias interpretations of patient preferences and distress, particularly in emotionally complex settings such as advanced cancer. Importantly, a paucity of studies exist that specifically focus on patients with metastatic cancer, limiting the ability to draw definitive conclusions for this population. Much of the evidence is extrapolated from broader oncology or portal-based studies, which may not fully capture the unique emotional, prognostic, and communication challenges of advanced disease. Additionally, most studies were conducted in U.S. academic health systems, potentially limiting generalizability to community settings or international contexts with different regulatory frameworks. Despite these limitations, this review provides a timely synthesis of an evolving evidence base and identifies critical gaps to inform future research and policy development.

Conclusions

In conclusion, expanded patient access to clinical information under the 21st Century Cures Act represents a meaningful advance in transparency and patient engagement, but implementation of this Act in cancer care presents unique challenges. For patients facing advanced disease, these dynamics may be particularly relevant given the frequency of testing and the potential for emotionally salient results, although direct evidence remains limited. The available evidence suggests that a one-size-fits-all approach to results release is unlikely to meet the unique needs of individuals with cancer. Future research should prioritize prospective, patient-centered evaluations of disclosure strategies in oncology, while health systems should pursue flexible, communication-focused approaches that preserve transparency without sacrificing emotional support and clinical context.

Acknowledgments

None.

Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-2026-1-0023/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-2026-1-0023/prf

Funding: None.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-2026-1-0023/coif). M.T. reports research support from the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery and the National Institute on Aging (payments to institution). Additional grants or contracts were received from Eli Lilly, Yosemite Health, and the Robert A. Winn Excellence in Clinical Trials Award (payments to institution). Consulting fees were received from Genentech (to institution). Honoraria for lectures or presentations were received from BioAscend (to author), which also provided travel support, along with support from the West Hawaii Cancer Symposium. M.T. has participated on advisory boards for Novartis, AstraZeneca, TerSera, and Foundation Medicine (payments to author), and Genentech (to institution). M.T. reports leadership involvement with the American Society of Clinical Oncology. Stock ownership includes Atara (spouse, prior), Poseida Therapeutics (self, prior), and Pfizer (spouse). The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

References

1. Bradford A, Ehsan S, Shahid U, et al. Electronic Test Result Communication in the Era of the 21st Century Cures Act. Rockville, MD: Agency for Healthcare Research and Quality; July 2024. AHRQ Publication No. 24-0010-3-EF. Available online: https://www.ahrq.gov/sites/default/files/publications2/files/diagnostic-safety-issue-brief-test-result-communication.pdf
2. Waseem N, Kircher S, Feliciano JL. Information Blocking and Oncology: Implications of the 21st Century Cures Act and Open Notes. JAMA Oncol 2021;7:1609-10. [Crossref] [PubMed]
3. Anyidoho PA, Verschraegen CF, Markham MJ, et al. Impact of the Immediate Release of Clinical Information Rules on Health Care Delivery to Patients With Cancer. JCO Oncol Pract 2023;19:e706-13. [Crossref] [PubMed]
4. Stegmann ME, Geerse OP, van Zuylen L, et al. Improving Care for Patients Living with Prolonged Incurable Cancer. Cancers (Basel) 2021;13:2555. [Crossref] [PubMed]
5. Biller LH, Schrag D. Diagnosis and Treatment of Metastatic Colorectal Cancer: A Review. JAMA 2021;325:669-85. [Crossref] [PubMed]
6. Strum S, Vincent M, Gipson M, et al. Assessment of serum tumor markers CEA, CA-125, and CA19-9 as adjuncts in non-small cell lung cancer management. Oncotarget 2024;15:381-8. [Crossref] [PubMed]
7. Kim G, Jung EJ, Ryu CG, et al. Usefulness of carcinoembryonic antigen for monitoring tumor progression during palliative chemotherapy in metastatic colorectal cancer. Yonsei Med J 2013;54:116-22. [Crossref] [PubMed]
8. Chakravarty D, Johnson A, Sklar J, et al. Somatic Genomic Testing in Patients With Metastatic or Advanced Cancer: ASCO Provisional Clinical Opinion. J Clin Oncol 2022;40:1231-58. [Crossref] [PubMed]
9. Webster SN, Biggs EE, Simons LE, et al. Bracing for the worst? Real-time scanxiety and uncertainty management during cancer surveillance. Health Psychol 2026;45:251-8. [Crossref] [PubMed]
10. Vehling S, Kissane DW. Existential distress in cancer: Alleviating suffering from fundamental loss and change. Psychooncology 2018;27:2525-30. [Crossref] [PubMed]
11. Emery J, Butow P, Lai-Kwon J, et al. Management of common clinical problems experienced by survivors of cancer. Lancet 2022;399:1537-50. [Crossref] [PubMed]
12. Brooks JV, Zegers C, Sinclair CT, et al. Understanding the Cures Act Information Blocking Rule in cancer care: a mixed methods exploration of patient and clinician perspectives and recommendations for policy makers. BMC Health Serv Res 2023;23:216. [Crossref] [PubMed]
13. Gerber DE. 21st Century Cures Act: Implementation Without Understanding Implication? JCO Oncol Pract 2022;18:85-7. [Crossref] [PubMed]
14. Baethge C, Goldbeck-Wood S, Mertens S. SANRA-a scale for the quality assessment of narrative review articles. Res Integr Peer Rev 2019;4:5. [Crossref] [PubMed]
15. Baun C, Vogsen M, Nielsen MK, et al. Perspective of Patients with Metastatic Breast Cancer on Electronic Access to Scan Results: Mixed-Methods Study. J Med Internet Res 2020;22:e15723. [Crossref] [PubMed]
16. Lam K, Leung CH, Soomro Z, et al. Perspectives from neuro-oncology providers on patient access to electronic records: a survey study. CNS Oncol 2024;13:2352414. [Crossref] [PubMed]
17. Polubriaginof FCG, Chimonas S, Lipitz-Snyderman A, et al. Does Transparency Promote Engagement? Cancer Patients' Access of Electronic Medical Records Before and After the Information Blocking Rule. AMIA Annu Symp Proc 2024;2024:900-9. [PubMed]
18. Ribeiro ASF, Husson O, Reuvers M, et al. Perspectives on access to imaging digital health records in oncology: A mixed methods systematic review. Health Policy Technol 2024;13. None. [Crossref] [PubMed]
19. Tannenbaum AP, Weisman PS, Harter TD. Open access to pathology reports: potential harms and proposed solutions. J Commun Healthc 2025;18:134-42. [Crossref] [PubMed]
20. Hulter P, Langendoen W, Pluut B, et al. Patients' choices regarding online access to laboratory, radiology and pathology test results on a hospital patient portal. PLoS One 2023;18:e0280768. [Crossref] [PubMed]
21. Pollock JR, Petty SAB, Schmitz JJ, et al. Patient Access of Their Radiology Reports Before and After Implementation of 21st Century Cures Act Information-Blocking Provisions at a Large Multicampus Health System. AJR Am J Roentgenol 2024;222:e2330343. [Crossref] [PubMed]
22. O'Brien E, Vemuru S, Leonard L, et al. Information transparency with immediate release: Oncology clinician and patient perceptions. Am J Surg 2024;227:165-74. [Crossref] [PubMed]
23. Rowe DG, Goodwin CR. Unintended Consequences of Patient Portal Access. JAMA Oncol 2025;11:601-2. [Crossref] [PubMed]
24. Alpert JM, Morris BB, Thomson MD, et al. Implications of Patient Portal Transparency in Oncology: Qualitative Interview Study on the Experiences of Patients, Oncologists, and Medical Informaticists. JMIR Cancer 2018;4:e5. [Crossref] [PubMed]
25. Louissaint J, Kyalwazi B, Deng J, et al. Timing and Method of Patient-Provider Communication for Abnormal Hepatocellular Carcinoma Screening Results in Cirrhosis. JCO Clin Cancer Inform 2025;9:e2400269. [Crossref] [PubMed]
26. Steitz BD, Turer RW, Lin CT, et al. Perspectives of Patients About Immediate Access to Test Results Through an Online Patient Portal. JAMA Netw Open 2023;6:e233572. [Crossref] [PubMed]
27. Steitz BD, Guide A, Rodriguez K, et al. Patient-Friendly Test Results and Patient-Initiated Messaging Among Adult Outpatients. JAMA Netw Open 2025;8:e2543879. [Crossref] [PubMed]
28. Steitz BD, Padi-Adjirackor NA, Griffith KN, et al. Impact of notification policy on patient-before-clinician review of immediately released test results. J Am Med Inform Assoc 2023;30:1707-10. [Crossref] [PubMed]
29. Steitz BD, Sulieman L, Wright A, et al. Association of Immediate Release of Test Results to Patients With Implications for Clinical Workflow. JAMA Netw Open 2021;4:e2129553. [Crossref] [PubMed]
30. Philpot LM, Ramar P, Roellinger DL, et al. Digital health literacy and use of patient portals among Spanish-preferred patients in the United States: a cross-sectional assessment. Front Public Health 2024;12:1455395. [Crossref] [PubMed]
31. Marcotte LM, Khor S, Wong ES, et al. A Pilot Analysis of Patient Portal Use and Breast Cancer Screening Among Black Patients in a Large Academic Health System. AJPM Focus 2025;4:100305. [Crossref] [PubMed]
32. Steitz BD, Turer RW, Salmi L, et al. Repeated Access to Patient Portal While Awaiting Test Results and Patient-Initiated Messaging. JAMA Netw Open 2025;8:e254019. [Crossref] [PubMed]
33. Kabarati L. OpenAI to Launch ChatGPT “Health” Amidst Shifting AI Regulatory Schemes Surrounding Privacy. Published February 8, 2026. Accessed February 10, 2026. Available online: https://www.healthlawpolicy.org/2026/02/08/openai-to-launch-chatgpt-health-amidst-shifting-ai-regulatory-schemes-surrounding-privacy/
34. van der Mee FAM, Ottenheijm RPG, Gentry EGS, et al. The impact of different radiology report formats on patient information processing: a systematic review. Eur Radiol 2025;35:2644-57. [Crossref] [PubMed]
35. Berlin L, Sosna J, Halevy D. Radiologist Found Liable for Malpractice in Israel for Causing a Patient's Suicide by Sending a "Bad News" Report: Can This Happen in the United States? AJR Am J Roentgenol 2017;208:241-4. [Crossref] [PubMed]
36. Alpert JM, Morris BB, Thomson MD, et al. Identifying How Patient Portals Impact Communication in Oncology. Health Commun 2019;34:1395-403. [Crossref] [PubMed]
37. Walker J, Leveille S, Bell S, et al. OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians' Outpatient Visit Notes. J Med Internet Res 2019;21:e13876. [Crossref] [PubMed]
38. Gilligan T, Bohlke K, Baile WF. Patient-Clinician Communication: American Society of Clinical Oncology Consensus Guideline Summary. J Oncol Pract 2018;14:42-6. [Crossref] [PubMed]
39. McCabe MS, Wood WA, Goldberg RM. When the family requests withholding the diagnosis: who owns the truth? J Oncol Pract 2010;6:94-6. [Crossref] [PubMed]