Digital Health Portals for Individuals Living With or Beyond Cancer: Patient-Driven Scoping Review

Introduction

Background

Patient portals are digital platforms designed to improve health outcomes and the quality of care by facilitating health data access and communication between individuals and their health care providers [1-5]. These portals offer remote access to provider-owned personal medical records from any location with internet connectivity [1,3-7]. By enabling timely communication with care teams and supporting informed decision-making, portals have the potential to enhance disease-related knowledge and patient engagement, while also contributing to the optimization of health care processes [1-5,7-11]. Their growing use reflects a shift toward empowering individuals and supporting more active and collaborative approaches to health management [12-16].

For conceptual precision, the terminology used in this study aligns with definitions commonly found in the peer-reviewed literature. Although similar in function, personal health records (PHRs) and patient portals differ in several ways [9,10,17]. PHRs are personally owned and controlled tools that allow individuals to enter, manage, and integrate health data from multiple sources. In contrast, patient portals are institutionally managed and contain information from one or more health care providers [9,10,17]. While PHRs generally provide greater user autonomy and integration of personal health information, patient portals are typically tethered to health care providers systems to facilitate interoperability [9,10,17].

Distinguishing electronic health records (EHRs) from electronic medical records (EMRs) is also relevant. EHRs are comprehensive, provider-maintained digital records intended for use across health care systems to support coordinated care and clinical decision-making [17]. Patient portals, in contrast, offer individuals limited access to selected health information contained within these systems, such as laboratory or tests results [7,17]. Although similar, EHRs differ from EMRs in scope [12]. EMRs function as digital equivalents of paper charts, typically limited to a single practice, whereas EHRs integrate information across multiple providers and support greater interoperability [7,11,17].

Patient portals, tethered to EHRs or EMRs, are secure online platforms enabling individuals to access their personal administrative and clinical information at any time and from any location [1,2]. This access to personal health information constitutes the core functionality of digital health portals, regardless of whether they are referred to as patient portals or PHRs [1,2,8]. More recent generations of portals can also include interoperable features that facilitate communication and care coordination with health care providers, such as secure messaging, appointment scheduling, and medications renewal capabilities [1,2].

Cancer care presents both challenges and opportunities for the implementation and meaningful use of these capabilities [3,4,6,8]. The complexity of oncology care, involving multidisciplinary teams, intensive treatments, and frequent clinical interactions, highlights the need for effective information management and communication systems. Patient portal can improve communication in complex context by promoting informational continuity, enhancing care coordination, and supporting engagement among individuals living with or beyond cancer [1-8]. In addition to (1) accessing their personal health information, these benefits are supported by enabling individuals to (2) communicate with providers through secure messaging and (3) access health services [1,2,4-7].

Improvements in health outcomes, including enhanced disease-related knowledge and self-efficacy, were associated with portal use for the chronic disease management contexts [1,5,7]. For instance, in diabetes management, portal use has been associated with improved clinical outcomes such as better glycemic control [1]. Evidence regarding clinical benefits in oncology, however, remains inconclusive. Studies focusing on breast cancer populations have demonstrated no consistent relationship between portal use and improvements in symptom management [8]. In addition, portals may contribute to improved health system efficiency by decreasing wait times and reducing missed appointments [2]. Research on their impact on health care use within diabetes management remains limited [1].

Patient portals and PHRs are associated with a range of potential benefits, spanning behavioral changes and system-level efficiencies [1,2,5,7,12-14,16,18,19]. A comprehensive assessment of the impact of digital health technologies requires consideration of multiple outcome domains [20,21]. These include behavioral and technology-related outcomes (eg, self-management, health behaviors, usability, and perceived usefulness); psychosocial outcomes (eg, emotional well-being and quality of life); clinical outcomes (eg, symptom burden, fatigue, and nutritional status); and system-level outcomes (eg, care coordination, cost-effectiveness, and hospital readmissions) [20]. However, substantially gaps remain in evaluating patient portals across multiple dimensions, along with limited understanding of the full range of outcomes associated with their use [21].

The use and impact of portals across diverse population groups remain insufficiently explored [22]. The PROGRESS-Plus (place of residence; race, ethnicity, culture, language, or occupation; gender or sex; religion; education; socioeconomic status; and social capital–Plus) framework offers a comprehensive lens for examining these disparities by highlighting social determinants of health [23]. For example, individuals in rural areas may face limited internet access, while patients from racial or ethnic minority groups may have lower rates of portal adoption. Socioeconomic constraints, lower educational attainment, and reduced social support have also been associated with possible decreased portal use [3-6,22,24,25]. Integrating the PROGRESS-Plus framework into evaluations of portal use in oncology may support the identification of inequities and inform the development of more inclusive digital health strategies.

Objectives

This scoping review aimed to identify the digital health portal functionalities reported in studies involving individuals living with or beyond cancer, as well as the categories of health outcomes assessed, including those related to the health care system. A secondary objective was to explore the diversity of participant characteristics and potential factors associated with portal use.

Methods

Overview

Aligned with the Canadian Institutes of Health Research Strategy for Patient-Oriented Research and Patient Engagement Framework [26], this study actively engaged “patient partners” (SO and CC), who are also coauthors, throughout all phases of the project. The Canadian Institutes of Health Research defines “patient partners” as individuals with lived experience of a health condition who engage meaningfully in the research process as members of the study team. In this review, SO and CC contributed to shaping the research objectives, codeveloping the work plan and study protocol with the full author team, and participating in the interpretation of findings.

This scoping review was conducted in accordance with the JBI (formerly the Joanna Briggs Institute) guidelines [27], and the protocol was registered in the Open Science Framework Registries [28]. The results are reported following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist [29]. The PCC (population [or participant], concept, and context) framework [30,31] was used to define the elements applied in this review (Table 1).

Search Strategy

The initial development of the search strategy was informed by 2 previously published systematic reviews: one examining patient portals functionalities and health outcomes in individuals with diabetes [1] and the other focusing on eHealth technologies for supportive care in breast cancer [8]. A preliminary search was first developed by the first author (SO) and the corresponding author (MS), drawing on the approaches used in these reviews. This strategy was subsequently refined in collaboration with an experienced librarian (MCL), who provided guidance on the final search terms and structure.

The search was conducted across 4 databases: Embase; Web of Science (SCI-EXPANDED, SSCI, AHCI, and ESCI); MEDLINE (Ovid); and CINAHL Plus with Full Text (EBSCOhost) to identify sources published between January 1, 2014, and February 27, 2024. Overall, 10 relevant sources, identified through hand-searching by the first author (SO), were used to assess the sensitivity of the database-specific search strategies provided in Multimedia Appendix 1. References were imported into the web-based collaborative tool Covidence [32] by the librarian (MCL), where duplicates were removed using both manual verification and the platform’s automated deduplication function.

The search start date was restricted to 2014 to ensure the relevance of the findings to contemporary technological capabilities. The past decade has seen rapid advancements in digital health, particularly in the adoption of patient portals and the availability of enhanced features [14,18,19]. Reflecting the fast-paced evolution of eHealth research, one review limited its search to studies published from 2016 onward [8]. In the United States, more recent generations of portals began gaining traction around 2012, with broader adoption and increasing research interest by 2015 [18]. In addition to providing access to laboratory and tests results, these portals increasingly incorporated functionalities such as secure messaging, prescription renewals, and appointment scheduling, contributing to more patient-centered and interoperable systems [14,19].

Data Collection

As shown in Table 1, the inclusion criteria were (1) participants living with or beyond cancer, (2) access to personal health information through a digital portal, and (3) at least one outcome related to health or the health care system. Studies conducted in hospital settings were excluded, as patients with cancer in these environments are typically managed by clinical teams overseeing all aspects of care and support. In addition, studies involving mixed populations of cancer and noncancer participants were excluded if subgroup-specific results for individuals living with or beyond cancer were not reported.

To ensure consistency in the application of the eligibility criteria, a calibration exercise was conducted before the screening phase. A sample of 20 records was independently reviewed by 5 team members (SO, WS, CC, FN, and MS), including one experienced reviewer (MS). During this process, it was observed that some titles and abstracts referred to access to EHRs or PHRs rather than explicitly using the term “patient portal.” Regardless of terminology, inclusion or exclusion decisions were based strictly on alignment with the predefined selection criteria.

Following calibration, the same 5 reviewers screened all titles and abstracts in duplicate using the established criteria. Discrepancies regarding inclusion at this stage were resolved through group consensus. Before full-text screening, a second calibration exercise was performed using a sample of 10 articles to further ensure consistency. Full-text review was also conducted in duplicate by the same team, with any disagreements regarding study inclusion resolved through consensus among all reviewers.

Data Extraction

In accordance with JBI guidance [33], a structured data extraction grid was developed and pretested during a team meeting involving all reviewers. Four reviewers (WS, CC, SO, and FN) independently extracted data from the included studies, and the results were subsequently verified by the first author (SO) and an experienced reviewer (MS) to ensure accuracy and completeness. A Microsoft Excel spreadsheet was used to manage the data extraction process. Extracted information included general study characteristics (such as article reference, first author, year of publication, country, study method, data source, and participant characteristics) and portal-related details (including portal name, type of accessible health information, availability of secure messaging, and access to health services provided), and reported outcomes.

Data Synthesis

All included studies involved portal use, defined as participants having access to their personal health information through a digital platform [1,2,4-7]. This include both patient portals and PHRs [9]. Data synthesis was structured using 3 conceptual frameworks. First, portal features were classified into three categories: (1) type of accessible health information, (2) availability of secure messaging, and (3) access to health services through the portal [1,2,7].

Second, study outcomes were grouped into four domains: (1) behavioral and technology-related experiences, (2) psychosocial outcomes, (3) clinical outcomes, and (4) health care system–related outcomes [20,28].

Third, the PROGRESS-Plus framework was applied to identify dimensions of social stratification that may influence portal use and related outcomes [23]. This framework includes the following factors: place of residence, race or ethnicity, occupation, gender or sex, religion, education, socioeconomic status, and social capital. The “Plus” component captures additional sources of potential disadvantage, such as age, disability, and other vulnerabilities relevant to health equity.

Results

Overview

Out of 1996 titles and abstracts, along with 142 full-text articles that underwent dual screening, 44 studies reported across 45 articles (1 study was reported in 2 separate articles) met the eligibility criteria. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 flow diagram is shown in Figure 1 [34].

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Characteristics of Included Studies

The characteristics of the included studies are presented in Table 2.

The 45 included articles (reporting on 44 studies) were published between 2014 and 2024, with an increase beginning in 2018 (4/45, 9%) compared to 2017 (2/45, 4%) [35-79]. The highest number of publications was observed in 2019 (9/45, 20%) and 2020 (9/45, 20%), followed by a decline in 2021 (6/45, 13%) and 2022 (6/45, 13%). This distribution is presented in Multimedia Appendix 2.

Of the 44 included studies, most were conducted in the United States (30/44, 68%), followed by the Netherlands (5/44, 11%) and Sweden (2/44, 5%). Seven other countries were each represented by a single study. Most studies used a quantitative design (23/44, 52%), followed by mixed methods (11/44, 25%) and qualitative approaches (10/44, 23%).

The number of participants with cancer ranged from 6 to 6495, or 9900 (reduced to 6446 after propensity score matching) in one study. Informal or family caregivers were included in 18% (8/44) of the studies, while individuals beyond active cancer treatment, described as cancer survivors, were included in 5% (2/44) of the studies.

Cancer Types and Stages

The cancer types and stages of participants in all included studies are presented in Multimedia Appendix 3. Among the 44 included studies, breast cancer was the most frequently reported cancer type (16/44, 36%), followed by hematologic cancers, including leukemia, lymphoma, and multiple myeloma (12/44, 27%). Gastrointestinal cancers, such as colorectal and stomach cancers, were reported in 18% (8/44) of the studies. Lung cancer was reported in 18% (8/44) of the studies, and prostate cancer was reported in 16% (7/44) of the studies. Sarcomas were reported in 11% (5/44) of the studies, brain tumors in 5% (2/44) of the studies, and kidney cancer in 5% (2/44) of the studies. Metastatic disease was identified among participants in 25% (11/44) of the studies, often involving advanced stages, including stage IV.

Portal Functionalities Reported and Outcomes Assessed

All 44 included studies involved participants who had access to their personal information or data through a digital portal. However, access to secure messaging features or other health services was not a required for inclusion. To address the primary objective of this review, which was to identify the functionalities of portals used by individuals with cancer and the outcomes assessed, their characteristics of are presented in Table 3.

Accessible Health Information

Regarding the access to personal health information via digital portals, the most commonly available feature was access to test and laboratory results (28/44, 64%), followed by physician notes (18/44, 41%), medication lists (15/44, 34%), and medical history, such as vaccination records (4/44, 9%).

Availability of Secure Messaging

Regarding the availability of secure messaging, 68% (30/44) of the studies reported that this functionality was available. In 30% (13/44) of the studies, secure messaging was not mentioned, not related to the study objectives, or not applicable. One study explicitly reported that secure messaging was not available.

Access to Health Services Provided

Regarding access to health services provided through digital portals, appointment-related functionalities such as scheduling, booking, or self-scheduling were the most frequently reported (19/44, 43%). Educational resources, general health information, or access to self-management libraries were available in 30% (13/44) of the studies, followed by medication refills, renewals, or other prescription-related features (11/44, 25%). Symptom tracking was reported in 16% (7/44) studies, caregiver access or support features in 11% (5/44) of the studies, patient-reported outcome collection in 7% (3/44) of the studies, and health status monitoring in 5% (2/44) of the studies. Access to health services was either not mentioned or not directly relevant to the study objective in 20% (9/44) of the studies.

Assessed Outcomes

The assessed outcomes were grouped into 4 categories. Behavioral and technology experience outcomes were the most frequently reported across studies (37/44, 84%), followed by health care system-level outcomes (19/44, 43%), psychosocial outcomes (16/44, 36%), and clinical outcomes (5/44, 11%). The complete list of outcomes is presented in Textbox 1 (total number of studies reflects those that assessed at least one outcome within a given category; studies that assessed multiple outcomes within the same category are counted only once per category).

Associations Between PROGRESS-Plus Factors and Portal Use

The second objective was to explore the diversity of participant characteristics and potential factors associated with portal use. The PROGRESS-Plus factors [23], as interpreted by the authors of the included studies, were identified in 43% (19/44) of the studies. These factors are summarized in Table 4.

Among the PROGRESS-Plus factors, age was the most frequently reported dimension, addressed in 68% (13/19) of the included studies. This was followed by socioeconomic status (10/19, 53%), and both race or ethnicity and gender or sex, each included in 37% (7/19) of the studies. In contrast, social capital was reported in only 11% (2/19) of the studies, while occupation and disability were each addressed in 5% (1/19) of the studies. Religion was not represented in any of the included studies.

In addition to the PROGRESS-Plus factors, we identified 5 individual, cancer-related characteristics associated with the portal use (Textbox 2 [42,45,60,69,78]).

Discussion

Principal Findings

Most of the included studies were conducted in the United States, reflecting the widespread implementation of patient portals with interoperable features in that country during the early 2010s [49,65]. Common portal functionalities, such as those offered by “MyChart,” developed by “Epic Systems,” include access to laboratory and test results, secure messaging with clinical teams, appointment scheduling, and prescription refill requests. These features appear to have shaped the focus of the studies included in this review.

The outcomes assessed aligned with the available portal functionalities. Behavioral and technology experience outcomes, psychosocial outcomes, and health system–related outcomes were assessed more frequently than clinical outcomes. Symptom tracking, patient-reported outcome collection, and health status monitoring were less commonly described. None of the studies reported features that allowed patients to add or amend notes in their medical records. The use of virtual or remote consultations was explicitly specified in only 2 studies [41,43].

Only 4 studies in our review focused on symptom-related clinical outcomes [37,41,46,62]. While confounding factors limit causal inference, these studies highlight portal features that may facilitate symptom management. Identified functionalities included access to educational resources [37], electronic symptom tracking [41], symptom and distress monitoring [46], and personalized care planning with scheduled follow-up messaging by oncology nurses [62]. Structured follow-up, individualized education, and active monitoring appear particularly promising. These features warrant greater integration into portals and further investigation to better understand their potential impact on symptom burden and overall clinical outcomes.

Regarding the diversity of participant characteristics and potential factors associated with portal use, the evidence was heterogeneous. Age was frequently examined, but the findings were inconsistent. Some studies reported greater portal use among younger individuals [42,51,56,60], while others observed higher use among older adults [35,45]. Gender-related findings were similarly mixed: in some cases, women were more likely to use portals [35,44,45,51], while in others, men were [42,60]. All studies assessed gender in binary terms, comparing men and women only; none of the studies included gender-diverse identities.

Other PROGRESS-Plus factors demonstrated more consistent associations. In studies conducted in the United States, White and Asian participants were generally more likely to use portals than Black or Hispanic participants [39,44,45,51,56,60,78]. Similarly, individuals with higher socioeconomic status [35,39,50,60,64,69,73] and those residing in urban areas [37,50,51,60,69] were generally more likely to engage with portals than those living in rural settings. In contrast, factors such as social capital, occupation, disability, and religion were rarely explored. Additional vulnerability-related characteristics were also identified, including language spoken [39,69], access to computers [61,64], health literacy [35], and digital proficiency [42,64]. These factors may influence equitable access to and use of patient portals.

Comparison With Previous Work

We identified 3 reviews that examined patient portals among populations with various health conditions [1,5,7]. In addition, 3 reviews explored digital health interventions for individuals living with or beyond cancer, although they did not focus specifically on patient portal use [3,8,22]. Our review adds to this body of work by focusing exclusively on individuals with or beyond cancer and their use of portals, defined as an access to personal health information or data [1,2,4-7].

One previous review, published in 2018, specifically addressed portal use among individuals with cancer [4]. It concluded that portals may support self-management, a behavioral outcome, particularly among individuals beyond cancer. Consistent with our findings, portal use was more common among White individuals and those with higher socioeconomic status. While that review called for further research on factors influencing portal use, our work provides an updated synthesis that incorporates the PROGRESS-Plus factors framework and captures a broader range of outcomes.

Another review of portal functionalities for individuals with diabetes reported that half of the included studies (6 out of 12) featured secure messaging, and a smaller portion (2 out of 12) provided access to health services [1]. These proportions were lower than what we observed in our review. In contrast to our findings, which included few clinical outcome assessments, that review identified associations between portal use and improved glycemic control. Similarly, another review examining portal use across diverse populations found that while behavioral outcomes were generally positive, the effects on clinical outcomes remained inconsistent, likely due to confounding factors [5].

One review focusing on patient education delivered through portals reported increased user engagement, improved behavioral outcomes, and high levels of satisfaction [7]. These results align with our findings, which indicate a stronger focus on behavioral and technology experience outcomes. In a breast cancer population, a review of eHealth tools, including portals, found mixed effects on symptoms and lifestyle-related outcomes, although user satisfaction was generally high [8]. Another review of digital health technologies also reported improvements in behavioral outcomes and technology-related experiences, particularly in the context of clinician-patient communication [3].

In relation to PROGRESS-Plus factors, a review on patient-centered technologies for underserved cancer populations in the United States, including African American, Hispanic, and rural communities, reported improved behavioral outcomes, such as better screening adherence and increased cancer-related knowledge [22]. These populations remain underrepresented in digital health research, reinforcing the relevance of our equity-focused analysis.

Prior reviews also identified several barriers to effective portal use. This included difficulty navigating complex interfaces and limited support for certain populations, particularly those with lower digital literacy [22]. In addition, a review on oncology portal use noted that while many patients accessed their health records, they often struggled to interpret the information they found [4].

Together, these findings are consistent with our review and support the need for more inclusive, user-centered portal design. Tailored implementation strategies that address the needs of diverse populations are important to ensuring equitable access and meaningful engagement, particularly when considering the PROGRESS-Plus factors identified in our review.

Strengths and Limitations

This review has several strengths. First, 44 studies exploring the use of digital health portals among individuals living with or beyond cancer were identified. Our inclusion criteria extended beyond portals solely tethered to medical records, encompassing all digital platforms that enabled these individuals to access their personal health information or data. Second, we identified and categorized portal functionalities into 3 distinct categories, and we grouped outcomes into 4 categories. Third, we applied the PROGRESS-Plus framework to identify potentially underserved populations and to highlight actionable opportunities for promoting health equity.

Nonetheless, some limitations should be acknowledged. First, we limited our search to studies published in the 10 years preceding March 2024. This time frame was selected to reflect current technological capabilities and patient engagement practices, with an emphasis on more advanced and interoperable portal systems. Given the pace of technological change during this period, it is unlikely that major relevant studies were overlooked. Second, our search strategy was not peer-reviewed by an independent librarian. However, detailed documentation is provided in Multimedia Appendix 1 to support transparency and replicability. Third, data extraction was conducted once by 4 novice reviewers. To ensure accuracy and consistency, all extracted data were subsequently validated by the first author (SO) and an experienced reviewer (MS) with expertise in methodology and digital health technologies.

Conclusions

This review provides an overview of digital health portal use among individuals living with or beyond cancer, encompassing both patient portals and PHRs. While these tools are increasingly implemented to support patient self-management, their actual impact on clinical outcomes remains uncertain. Our findings indicate that research has predominantly focused on portals implemented in the United States and has emphasized behavioral and technology experience outcomes, with comparatively limited attention to clinical outcomes and equity considerations.

Disparities were observed in the availability of portal functionalities, the types of outcomes assessed, and the extent to which PROGRESS-Plus factors were reported or analyzed. Features such as secure messaging and access to services such as appointment scheduling and medication renewals were the most described. In contrast, functionalities such as personalized care programs and symptom tracking tools were less frequently represented. Furthermore, portal use was lower among certain population groups, and several PROGRESS-Plus factors remained underexplored or absent from analysis.

These findings offer valuable insights for researchers, health care providers, policy makers, patient advocacy groups, and digital health engineering teams engaged in the design and implementation of patient-centered technologies. To ensure that digital health portals contribute meaningfully to cancer care for all individuals, future research should prioritize more inclusive designs and evaluation strategies that address both outcome diversity and social determinants of health.