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Journal of Medical Internet Research

The leading peer-reviewed journal for digital medicine and health and health care in the internet age. .

Gunther Eysenbach, MD, MPH, FACMI, Founding Editor and Publisher; Adjunct Professor, School of Health Information Science, University of Victoria, Canada

The Journal of Medical Internet Research (JMIR) is the pioneer open access eHealth journal, and is the flagship journal of JMIR Publications. It is a leading health services and digital health journal globally in terms of quality/visibility (Journal Impact Factor™ 5.8 (Clarivate, 2024)) , ranking Q1 in both the 'Medical Informatics' and 'Health Care Sciences & Services' categories, and is also the largest journal in the field. The journal is ranked #1 on Google Scholar in the 'Medical Informatics' discipline. The journal focuses on emerging technologies, medical devices, apps, engineering, telehealth and informatics applications for patient education, prevention, population health and clinical care.

JMIR is indexed in all major literature indices including National Library of Medicine(NLM)/MEDLINE , Sherpa/Romeo,   PubMed,   PMC ,  Scopus , Psycinfo, Clarivate (which includes Web of Science (WoS)/ESCI/SCIE) , EBSCO/EBSCO Essentials,  DOAJ , GoOA and others. The Journal of Medical Internet Research received a CiteScore of 14.4 , placing it in the 95th percentile (#7 of 138) as a Q1 journal in the field of Health Informatics. It is a selective journal complemented by almost 30 specialty JMIR sister journals , which have a broader scope, and which together receive over 10,000 submissions a year. 

As an open access journal, we are read by clinicians, allied health professionals, informal caregivers, and patients alike, and have (as with all JMIR journals) a focus on readable and applied science reporting the design and evaluation of health innovations and emerging technologies. We publish original research, viewpoints, and reviews (both literature reviews and medical device/technology/app reviews). Peer-review reports are portable across JMIR journals and papers can be transferred, so authors save time by not having to resubmit a paper to a different journal but can simply transfer it between journals. 

We are also a leader in participatory and open science approaches, and offer the option to publish new submissions immediately as preprints , which receive DOIs for immediate citation (eg, in grant proposals), and for open peer-review purposes. We also invite patients to participate (eg, as peer-reviewers) and have patient representatives on editorial boards.

As all JMIR journals, the journal encourages Open Science principles and strongly encourages publication of a protocol before data collection. Authors who have published a protocol in  JMIR Research Protocols  get a discount of 20% on the Article Processing Fee when publishing a subsequent results paper in any JMIR journal.

Be a widely cited leader in the digital health revolution and  submit your paper today !

Recent Articles

Inflammatory bowel disease (IBD) poses significant challenges for patients, requiring continuous monitoring and self-management to improve quality of life.

Exercise interventions often improve moderate to vigorous physical activity, but simultaneously increase sedentary time due to a compensatory resting response. A higher level of sedentary time is associated with a lower level of executive function, while increased moderate to vigorous physical activity is associated with improved global cognition and working memory among Latino adults. Latino adults are the fastest-growing minority group in the United States and are at high risk for cognitive decline, spend more time sedentary compared to non-Hispanic populations, and engage in low levels of physical activity. Interventions that are culturally appropriate for Latino adults to replace sedentary time with physical activity are critically needed.

Peer support for chronic pain is increasingly taking place on social media via social networking communities. Several theories on the development and maintenance of chronic pain highlight how rumination, catastrophizing, and negative social interactions can contribute to poor health outcomes. However, little is known regarding the role web-based health discussions play in the development of negative versus positive health attitudes relevant to chronic pain.

Breast cancer is a leading global health concern, necessitating advancements in recurrence prediction and management. The development of an artificial intelligence (AI)–based clinical decision support system (AI-CDSS) using ChatGPT addresses this need with the aim of enhancing both prediction accuracy and user accessibility.

Sepsis is a heterogeneous syndrome, and enrollment of more homogeneous patients is essential to improve the efficiency of clinical trials. Artificial intelligence (AI) has facilitated the identification of homogeneous subgroups, but how to estimate the uncertainty of the model outputs when applying AI to clinical decision-making remains unknown.

eHealth interventions have proven to be valuable resources for users with diverse mental and behavioral health concerns. As these technologies continue to proliferate, both academic researchers and commercial app creators are leveraging the use of features that foster a sense of social connection on these digital platforms. Yet, the literature often insufficiently represents the functionality of these key social features, resulting in a lack of understanding of how they are being implemented.

Decentralized clinical trials (DCTs) are becoming increasingly popular. Digital clinical trial platforms are software environments where users complete designated clinical trial tasks, providing investigators and trial participants with efficient tools to support trial activities and streamline trial processes. In particular, digital platforms with a modular architecture lend themselves to DCTs, where individual trial activities can correspond to specific platform modules. While design features can allow users to customize their platform experience, the real strengths of digital platforms for DCTs are enabling centralized data capture and remote monitoring of trial participants and in using digital technologies to streamline workflows and improve trial management. When selecting a platform for use in a DCT, sponsors and investigators must consider the specific trial requirements. All digital platforms are limited in their functionality and technical capabilities. Integrating additional functional modules into a central platform may solve these challenges, but few commercial platforms are open to integrating third-party components. The lack of common data standardization protocols for clinical trials will likely limit the development of one-size-fits-all digital platforms for DCTs. This viewpoint summarizes the current role of digital platforms in supporting decentralized trial activities, including a discussion of the potential benefits and challenges of digital platforms for investigators and participants. We will highlight the role of the digital platform in the development of DCTs and emphasize where existing technology is functionally limiting. Finally, we will discuss the concept of the ideal fully integrated and unified DCT and the obstacles developers must address before it can be realized.

Wearable digital health technologies and mobile apps (personal digital health technologies [DHTs]) hold great promise for transforming health research and care. However, engagement in personal DHT research is poor.

Hypertension management apps (HMAs) can be effective in controlling blood pressure, but their actual impact is often suboptimal. Establishing a user satisfaction evaluation indicator system for HMAs can assist app developers in enhancing app design and functionality, while also helping users identify apps that best meet their needs. This approach aims to improve the overall effectiveness of app usage.

Research is needed to understand and address barriers to risk management for women at high (≥20% lifetime) risk for breast cancer, but recruiting this population for research studies is challenging.

Small clinics are important in providing health care in local communities. Accurately predicting their closure would help manage health care resource allocation. There have been few studies on the prediction of clinic closure using machine learning techniques.

The mpox pandemic has caused widespread public concern around the world. The spread of misinformation through the internet and social media could lead to an infodemic that poses challenges to mpox control.

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Research articles

Prostate cancer incidence and mortality in europe and implications for screening, long term exposure to road traffic noise and air pollution and risk of infertility, risk of dementia after sglt-2 inhibitors versus dpp-4 inhibitors in adults with type 2 diabetes, comparative oral monotherapy of psychedelics and escitalopram for depressive symptoms, suicide rates among physicians compared with the general population in studies from 20 countries, clinical value of guideline recommended molecular targets and genome targeted cancer therapies: cross sectional study, decompression alone or with fusion for degenerative lumbar spondylolisthesis, intake of sugar sweetened beverages among children and adolescents, estimating the economic effect of harm associated with high risk prescribing of oral non-steroidal anti-inflammatory drugs, personal protective effect of wearing surgical face masks in public spaces, learning implementation of a guideline based decision support system to improve hypertension treatment in primary care in china, intraosseous versus intravenous vascular access in upper extremity among adults with out-of-hospital cardiac arrest, trends in long term vaping among adults in england, 2013-23, covid-19 infection and vaccination during first trimester and risk of congenital anomalies, lee silverman voice treatment versus nhs speech and language therapy versus control for dysarthria in people with parkinson’s disease, effectiveness of behavioural interventions with motivational interviewing on physical activity outcomes, trends in cardiovascular disease incidence among 22 million people in the uk over 20 years, colchicine in patients with acute ischaemic stroke or transient ischaemic attack, sglt-2 inhibitors, glp-1 receptor agonists, and dpp-4 inhibitors and risk of hyperkalemia among people with type 2 diabetes, nab-paclitaxel, cisplatin, and capecitabine versus cisplatin and gemcitabine as first line chemotherapy in patients with nasopharyngeal carcinoma, lateral episiotomy or in vacuum assisted delivery in nulliparous women, global burden of type 1 diabetes in adults aged 65 years and older, antiplatelet therapy after coronary artery bypass surgery, mailed feedback to primary care physicians on antibiotic prescribing, tislelizumab plus chemotherapy versus placebo plus chemotherapy as first line treatment for advanced gastric or gastro-oesophageal junction adenocarcinoma, epidural analgesia during labour and severe maternal morbidity, exposure to antibiotics during pregnancy or early infancy and risk of neurodevelopmental disorders, clinical and healthcare use outcomes after cessation of long term opioid treatment due to prescriber workforce exit, effect of the hpv vaccination programme on incidence of cervical cancer by socioeconomic deprivation in england, long acting progestogens vs combined oral contraceptive pill for preventing recurrence of endometriosis related pain, ultra-processed food consumption and all cause and cause specific mortality, comparative effectiveness of second line oral antidiabetic treatments among people with type 2 diabetes mellitus, efficacy of psilocybin for treating symptoms of depression, reverse total shoulder replacement versus anatomical total shoulder replacement for osteoarthritis, effect of combination treatment with glp-1 receptor agonists and sglt-2 inhibitors on incidence of cardiovascular and serious renal events, prenatal opioid exposure and risk of neuropsychiatric disorders in children, temporal trends in lifetime risks of atrial fibrillation and its complications, antipsychotic use in people with dementia, predicting the risks of kidney failure and death in adults with moderate to severe chronic kidney disease, impact of large scale, multicomponent intervention to reduce proton pump inhibitor overuse, esketamine after childbirth for mothers with prenatal depression, glucagon-like peptide 1 receptor agonist use and risk of thyroid cancer, use of progestogens and the risk of intracranial meningioma, delirium and incident dementia in hospital patients, derivation and external validation of a simple risk score for predicting severe acute kidney injury after intravenous cisplatin, quality and safety of artificial intelligence generated health information, large language models and the generation of health disinformation, 25 year trends in cancer incidence and mortality among adults in the uk, cervical pessary versus vaginal progesterone in women with a singleton pregnancy, comparison of prior authorization across insurers, diagnostic accuracy of magnetically guided capsule endoscopy with a detachable string for detecting oesophagogastric varices in adults with cirrhosis, ultra-processed food exposure and adverse health outcomes, added benefit and revenues of oncology drugs approved by the ema, exposure to air pollution and hospital admission for cardiovascular diseases, short term exposure to low level ambient fine particulate matter and natural cause, cardiovascular, and respiratory morbidity, optimal timing of influenza vaccination in young children, effect of exercise for depression, association of non-alcoholic fatty liver disease with cardiovascular disease and all cause death in patients with type 2 diabetes, duration of cpr and outcomes for adults with in-hospital cardiac arrest, clinical effectiveness of an online physical and mental health rehabilitation programme for post-covid-19 condition, atypia detected during breast screening and subsequent development of cancer, publishers’ and journals’ instructions to authors on use of generative ai in academic and scientific publishing, effectiveness of glp-1 receptor agonists on glycaemic control, body weight, and lipid profile for type 2 diabetes, neurological development in children born moderately or late preterm, invasive breast cancer and breast cancer death after non-screen detected ductal carcinoma in situ, all cause and cause specific mortality in obsessive-compulsive disorder, acute rehabilitation following traumatic anterior shoulder dislocation, perinatal depression and risk of mortality, undisclosed financial conflicts of interest in dsm-5-tr, effect of risk mitigation guidance opioid and stimulant dispensations on mortality and acute care visits, update to living systematic review on sars-cov-2 positivity in offspring and timing of mother-to-child transmission, perinatal depression and its health impact, christmas 2023: common healthcare related instruments subjected to magnetic attraction study, using autoregressive integrated moving average models for time series analysis of observational data, demand for morning after pill following new year holiday, christmas 2023: christmas recipes from the great british bake off, effect of a doctor working during the festive period on population health: experiment using doctor who episodes, christmas 2023: analysis of barbie medical and science career dolls, christmas 2023: effect of chair placement on physicians’ behavior and patients’ satisfaction, management of chronic pain secondary to temporomandibular disorders, christmas 2023: projecting complete redaction of clinical trial protocols, christmas 2023: a drug target for erectile dysfunction to help improve fertility, sexual activity, and wellbeing, christmas 2023: efficacy of cola ingestion for oesophageal food bolus impaction, conservative management versus laparoscopic cholecystectomy in adults with gallstone disease, social media use and health risk behaviours in young people, untreated cervical intraepithelial neoplasia grade 2 and cervical cancer, air pollution deaths attributable to fossil fuels, implementation of a high sensitivity cardiac troponin i assay and risk of myocardial infarction or death at five years, covid-19 vaccine effectiveness against post-covid-19 condition, association between patient-surgeon gender concordance and mortality after surgery, intravascular imaging guided versus coronary angiography guided percutaneous coronary intervention, treatment of lower urinary tract symptoms in men in primary care using a conservative intervention, autism intervention meta-analysis of early childhood studies, effectiveness of the live zoster vaccine during the 10 years following vaccination, effects of a multimodal intervention in primary care to reduce second line antibiotic prescriptions for urinary tract infections in women, pyrotinib versus placebo in combination with trastuzumab and docetaxel in patients with her2 positive metastatic breast cancer, association of dcis size and margin status with risk of developing breast cancer post-treatment, racial differences in low value care among older patients in the us, pharmaceutical industry payments and delivery of low value cancer drugs, follow us on, content links.

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The health-economic impact of a prospectively validated severity of illness predictor for adult critical care, families' perception of the psychological effects of screen use in the covid-19 pandemic and post-pandemic in the age group of 4 to 12 years age group in asunción, paraguay, the impact of endothelial dysfunction on the course of metabolically associated liver disease in combination with subclinical hypothyroidism, measuring dementia symptoms: using the mini-mental state examination as a surrogate for the clinical dementia rating scale when evaluating dementia interventions, a comparative analysis of hypofractionated and conventional radiotherapy for breast cancer patients: a retrospective cohort study, knowledge, attitudes, and preventive practices towards sexually transmitted infections among youth in tonga: local evidence to strengthen preventive actions, from numbers to insights: bibliometric analysis of obesity and heart disease research output, challenges in the 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deceased donor liver transplantation, burnout syndrome in intensive care unit workers in a city in northeastern brazil, intelligent insights for noninvasive aortic valve stenosis therapeutics, creation of a novel 3d-printed amniocentesis simulation model and impact on resident confidence, the effect of acupuncture on hippocampal synaptic plasticity in alzheimer disease mouse model: possible mechanisms of energy transportation in neurons, effectiveness of xbb.1.5 vaccines against omicron subvariants, an accurate algebraic closed form solution for drug transport kinetics through p-glycoprotein expressing confluent cell monolayers by fitting our experimentally derived empirical fitting function with the elementary rate constants of 370 virtual p-gp subs, psychometric evaluation of screens for common mental disorders, severe mental disorders, substance use disorders, and suicide risk in mozambican healthcare, disease spreading through complex small world networks, tackling the radiotherapy 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Women, Black people and disadvantaged less likely to get heart surgery in England, suggests research

by British Medical Journal

Women, people of Black ethnicity and those from low income households in England are less likely to be offered heart surgery than men, white people, and those who are affluent, finds research published online in the journal Heart .

And when they do have these procedures, they are more likely to die within a year, prompting the researchers to call for prompt action to tackle these health inequalities .

Cardiac surgery is one of the costliest ways of treating cardiovascular disease , with around 28,000 adults a year in the UK undergoing the procedure, note the researchers. While previously published research shows that gender, ethnicity, and social/ economic deprivation can affect the short term outcomes of cardiac surgery , it's not clear what impact they might have on longer term outcomes.

To find out, the researchers used Hospital Episode Statistics (HES) and Office for National Statistics (ONS) data to explore differences in access to and outcomes of cardiac surgery ( coronary artery bypass grafting (CABG) and heart valve procedures) in England among people admitted with heart disease by sex, ethnicity, and deprivation between 2010 and 2019.

They calculated the rates of death in hospital, and at one, three, and five years after surgery, as well as readmission for cardiovascular causes, heart failure, and stroke/transient ischemic attack ('mini stroke').

Between 2010–19, 292,140 people had cardiac surgery: 49% CABG; 38% valve surgery; and 13% combined surgery. In all, 28% of all these patients were women, 11% were from an ethnic minority, and 17% lived in areas of greatest deprivation.

Rates of both CABG and valve surgery fell between 2010 and 2019, from 30 to 25 per 1,000 people with ischemic heart disease , and from 88 to 70/1,000 people with heart valve disease.

The age, sex, ethnicity, and levels of deprivation of those having surgery were similar across the entire period, although the proportions of those with multiple conditions and frailty and those admitted as an emergency increased between 2010 and 2019.

Women were 59% less likely to have CABG and 31% less likely to have valve surgery than men. And Black people were less likely to have surgery than white people: 32% less likely for CABG and 33% less likely for valve surgery. While people of South Asian ethnicity were 49% more likely to have CABG, they were 28% less likely to have valve surgery than white people.

And there was almost a linear association between increasing levels of deprivation and decreasing likelihood of getting cardiac surgery, with the most socially disadvantaged 35% and 39% less likely to have CABG and valve surgery, respectively, than the least disadvantaged.

As to outcomes, hospital deaths fell for all types of cardiac surgery between 2010 and 2019 by around 20% (from 3.4% to 2.7%). But women were more likely to die than men, and people of South Asian ethnicity were more likely to die than white people. Black people were more likely to die than their white counterparts, but only after CABG.

Around seven in every 100 people died within one year of all types of cardiac surgery, and one in five people were readmitted to hospital, rising to almost one in four for those having valve surgery. Unlike hospital deaths, which fell over time, deaths after one year and hospital readmissions didn't.

Women, Black people, and those living in the most deprived areas were also more likely to die within one year of surgery: 24%, 85%, and 18% more likely, respectively, for CABG; 19% (women) and 10% (people from areas of greatest deprivation) more likely for valve surgery.

The researchers acknowledge that HES coding varies among hospitals and that ethnicity wasn't coded for 10% of the data entries. And people with ischemic heart or valve disease don't necessarily represent the full gamut of those in need of cardiac surgery.

The decline in the use of cardiac surgery for treatment over time reflects trends in both Europe and the U.S., they note. But the differences in access to surgery and outcomes by demographic and socioeconomic characteristics need to be tackled as a matter of priority, they insist.

"There is an urgent need to address inequalities through enhanced data linkage and improved transparency and publication of data from benchmarking exercises on inequality characteristics and ensuring equity of the workforce and pathways people use to access care," they conclude.

In a linked editorial, Dominique Vervoort of the University of Toronto, Canada, comments that access to cardiac surgery in high income countries with universal health coverage is generally assumed to be equal.

However, "Across the continuum of cardiovascular care for patients living with cardiac surgical conditions, there are potential gaps in access to care because of social determinants of health," he writes.

"Identifying inequalities and inequities in access to cardiac surgical care is essential for health systems to understand which patients might be left behind. Health services research with a focus on health care utilization, health equity, and patient centeredness must, therefore, be supported," he adds.

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Access and Use of Electronic Health Information by Individuals with Cancer: 2020-2022

ASTP Data Brief | No. 73 | August 2024

In 2024, an estimated 2 million new cases of cancer will be diagnosed in the US (1). As of January 2022, there were an estimated 18.1 million cancer survivors in the US, which is projected to increase to 22.5 million by 2032 (1). For cancer survivors and those managing a recent diagnosis, having access to online medical records via patient portals or smartphone-based health apps is critical to managing complex health needs such as viewing lab results or clinical notes, communicating with providers, and sharing information with caregivers and other providers involved in their care. In early 2024, as part of the Cancer Moonshot initiative, the White House reaffirmed their commitment to enhancing patient navigation in cancer care (2). Ensuring patients and caregivers have easy access to information they need to manage their health and care is critical to enabling patients to navigate a recent cancer diagnosis or cancer survivorship. This brief pools data from two years of the National Cancer Institute’s nationally representative Health Information National Trends Survey (HINTS) to examine the access and use of health information by individuals with cancer in 2020-2022.

• More than 6 in 10 individuals with a recent cancer diagnosis were offered and accessed their online medical records in 2020-2022, a significant increase from 2017-2018.
• Individuals with a recent cancer diagnosis frequently accessed their online medical records: 40% accessed their records 6 or more times in the past year – nearly twice the rate of those who have never had cancer (23%).
• Frequent users and individuals with a recent cancer diagnosis had higher rates of using multiple methods (both an app and website) to access their online medical records.
• Nearly all users with a recent cancer diagnosis used their online medical records or patient portal to view test results.

More than half of individuals with a recent cancer diagnosis reported having multiple patient portals or online medical records.

The share of individuals offered access to their online medical records increased significantly between 2017-2018 and 2020-2022, particularly among individuals with a recent cancer diagnosis..

★ Eighty percent of individuals with a recent cancer diagnosis were offered access to their online medical records in 2020-2022—a 38% increase from 2017-2018 (58%).

★ Between 2017-2018 and 2020-2022, a greater share of individuals who were offered online access to their records reported accessing them at least once in the past year. While rates increased across all categories, they were highest among individuals with a recent cancer diagnosis (65%) compared to cancer survivors (52%) and those who never had cancer (47%).

Figure 1: Change in the percent of individuals who were offered access to their online medical records by cancer status, 2017-2018 vs. 2020-2022. 

Source: HINTS 5, Cycle 1 (2017); HINTS 5, Cycle 2 (2018); HINTS 5, Cycle 4 (2020); HINTS 6 (2022) Notes: Denominator represents all individuals and percentages reflect weighted national estimates. Recent cancer diagnosis was defined as individuals who reported that their first cancer diagnosis occurred in the past 5 years. Cancer survivor was defined as individuals who reported that their first cancer diagnosis occurred more than five years ago. Never had cancer was defined as individuals who reported that they have never been diagnosed with cancer. *Indicates statistically significant difference from the “Never had cancer” group (p<0.05). Original source of 2017-2018 statistics: Access and Use of Electronic Health Information by Individuals with Cancer: 2017-2018 | HealthIT.gov .

Forty percent of individuals with a recent cancer diagnosis reported accessing their online medical records or patient portal 6 or more times in the past year.

★ Individuals with a recent cancer diagnosis accessed their information more frequently: 40% of individuals with a recent cancer diagnosis accessed their online medical records 6 or more times in the past year (“frequent users”) – nearly twice the rate of those who have never had cancer (23%).

★ Less than 1 in 5 cancer survivors and those with a cancer diagnosis (18%) reported accessing their online medical records 1 or 2 times in the past year (“infrequent users”) as compared to over a quarter (27%) of those who never had cancer.

Figure 2: Frequency of access within the past year among those offered a portal by cancer status, 2020-2022. 

Source: HINTS 5, Cycle 4 (2020); HINTS 6 (2022) Notes: Denominator represents individuals who were offered a portal by their health care provider or insurer. *Indicates statistically significant difference from the “Never had cancer” group (p<0.05).

Frequent users and individuals with a recent cancer diagnosis had higher rates of using multiple methods to access their information electronically.

★ In 2020-2022, individuals with a recent cancer diagnosis—who tend to be frequent users (Figure 2)—had higher rates of using multiple methods (both a smartphone-based health app and web-based portal) to access their online medical records (31%) (Panel A).

★ While many individuals used only web-based methods to access their records, frequent users had higher rates of using multiple methods of access, regardless of cancer status (Panel B).

Figure 3: Methods individuals used to access their online medical records by cancer status and frequency of access, 2020-2022. 

Source: HINTS 5, Cycle 4 (2020); HINTS 6 (2022)  Notes: Denominator represents individuals who accessed their online medical records at least once within the past year. Don’t know responses to the methods of access question were excluded. *Indicates statistically significant difference from the “Never had cancer” (Panel A) or “6 or more times” (Panel B) reference group (p<0.05).

Nearly all users with a recent cancer diagnosis used their access to view test results.

★ Viewing tests results and clinical notes were the most common uses of patient portals or online medical records among those who access them, regardless of cancer status.

★ Cancer survivors and individuals with a recent cancer diagnosis used their online medical record or patient portal to view test results (93%) or clinical notes (77%) at higher rates than individuals who have never had cancer (88% and 68%, respectively).

★ Rates of portal use for downloading health information or transmitting information to a 3rd party did not differ substantially by cancer status.

Figure 4: Individuals’ use of online medical records or patient portal to view, download, or transmit information by cancer status, 2020-2022. 

Source: HINTS 5, Cycle 4 (2020); HINTS 6 (2022) Notes: Denominator represents individuals who accessed their online medical records at least once within the past year. For 'view clinical notes' data come from two different questions. In 2020, the survey asks whether respondents' online medical records include clinical notes (Yes vs. No or don’t know). In 2022, the survey asks whether respondents used their online medical record to view clinical notes (Yes vs. No). Missing values were excluded from the denominator. *Indicates statistically significant difference from the “Never had cancer” group (p<0.05).

★ Individuals with a recent cancer diagnosis had significantly higher rates of having multiple online records or patient portals (59%, 2.2 portals on average) compared to cancer survivors (48%, 1.2 on average) and those who have never had cancer (43%, 1.7 on average)

★ Individuals with a recent cancer diagnosis reported using a 3rd party app to organize information from multiple portals or online medical records at higher rates (8%) than cancer survivors (4%) and those who have never had cancer (5%).

★ A greater share of individuals, regardless of cancer status, reported having a patient portal or online medical record through their primary care provider (63% nationally).

Table 1: Organization or provider types with which individuals have an online medical record or patient portal and use of 3rd party apps to organize information from multiple records or portals, 2022. 

Source: HINTS 6 (2022) Notes: Denominator represents all individuals. National estimates reported in parentheses in Column 1. Questions were available in HINTS 6 (2022) only. Missing values excluded from the denominator. *Indicates statistically significant difference from the “Never had cancer” group (p<0.05).

Cancer is one of the most prevalent chronic diseases in the US. Nearly 40% of individuals will be diagnosed with cancer at some point during their lifetimes, (1) which speaks to the importance of ensuring individuals navigating a recent diagnosis or cancer survivorship have easy access to tools to navigate their care. In 2020 and 2022, more than three-quarters of cancer survivors (73%) and individuals with a recent cancer diagnosis (80%) were offered access to their online medical records or patient portal by a health care provider or insurer – a significant increase from 2017-2018. This increase likely reflects broader growth in patients being offered online access to their electronic health information during the COVID-19 pandemic—which likely spurred demand for online access to medical records including test results. This increased demand was supported by the implementation of the Cures Act Final Rule, which aimed to make it easier and more convenient for patients to access their electronic health information using smartphone- or web-based health apps (3-5).

In 2020-2022, most patients who were offered access to their online medical records or patient portal reported accessing them at least once in the past year. Rates of access were higher among individuals with a recent cancer diagnosis (82%) compared to cancer survivors (71%) and those who never had cancer (72%). Individuals with a recent diagnosis were also more frequent users: 40% accessed their online medical records or patient portal 6 or more times in the past year compared to about a quarter of cancer survivors (26%) and those who have never had cancer (23%). Frequent access among individuals with a recent diagnosis may be attributable to more frequent health care visits following a diagnosis. Having online access to medical records allows patients to view test results and clinical notes, communicate with providers, and download or share information with other members of the care team.

Patient portals and smartphone-based health apps, which help enable individuals manage information from multiple online medical records or patient portals, can help bridge the gap in cancer care by providing an electronic means of navigating care and facilitating patient-provider communication. Studies have shown that patient portal use is associated with greater perceived patient-centered communication among individuals with cancer and other chronic conditions (6, 7). Individuals with a recent cancer diagnosis—who tend to be frequent users—had higher rates of using multiple methods (both an app and a web-based portal) to access their information electronically. Individuals with a recent cancer diagnosis also had higher rates of having multiple online records or patient portals (59%, 2.2 portals on average)—particularly portals or records with other health care provider (e.g., specialists)—compared to cancer survivors (48%, 1.2 on average) and those who have never had cancer (43%, 1.7 on average).

One option available to individuals to share information across portals is to download or transmit their electronic health information. However, rates of downloading or transmitting information have been consistently low—even among those with a recent cancer diagnosis—suggesting there may be differences in availability, lack of awareness, or lower demand for these functionalities. Aggregating data from multiple records using 3rd party health apps is a more recently available option to manage information contained in different portals. Individuals with a recent cancer diagnosis reported using 3rd party health apps to organize information from multiple portals or online medical records at slightly higher rates (8%) than cancer survivors (4%) and those who have never had cancer (5%). Despite relatively low use of these portal organizing apps, this difference in use suggests greater utility for individuals with cancer or another chronic condition to streamline access to information contained in multiple records.

Ensuring patients and caregivers have easy access to information they need to manage their health and care is critical to enabling patients to navigate a recent cancer diagnosis or cancer survivorship. Targeted efforts to improve patient access and simplify patient navigation can help further promote patient-centered communication, empower patients to make informed decisions about their health and care, and aid the delivery of person-centered care. As part of the Cancer Moonshot initiative, the White House recently announced CancerX —a multi-stakeholder public-private partnership aimed at developing innovative approaches to reduce the burden of cancer, including by focusing on ways to leverage existing technology and advancing the development and commercialization of new digital tools to enhance patient access and ease the burden of cancer navigation. One such initiative that aligns with the Cancer Moonshot priorities is the Centers for Medicare & Medicaid Services’  Enhancing Oncology Model (EOM), an innovative payment model that aims to improve health care providers’ ability to deliver patient-centered care, enhance coordination across all of a patients’ health care providers, and support personalized services that help patients navigate and manage their care.

In addition to ongoing efforts to promote enhance patient navigation, there are parallel efforts aimed at increasing the standardized capture of data elements that will assist patients, providers, researchers, and public health practitioners in gaining access to the information needed to further cancer prevention, diagnosis, research and care. The  USCDI+ Cancer Initiative —a collaboration between the National Cancer Institute and the Office of the Assistant Secretary for Technology Policy—aims to support the adoption and use of interoperable cancer health IT standards and advance the development and adoption of cancer-specific use cases (e.g., clinical trial matching; timeliness of cancer registry reporting) to more broadly support the cancer community. Furthermore, in alignment with  The White House’s call to action regarding improving cancer care through better electronic health records (EHRs), CancerX is working closely with partners, members, and healthcare technology companies to contribute input to the development of and ultimately  support broad industry adoption of USCDI+ Cancer to improve the usability and accessibility of cancer data to benefit patient care everywhere.

Reducing the burden of cancer is a national priority. Several federal efforts are underway to advance cancer-focused research, reduce the burden of navigating cancer care, and enhance patient access. Patient portals and apps can help patients navigate cancer by enabling easy, secure access to information needed to manage their health and care. Looking forward, it will be important to ensure that emerging tools and technologies are widely accessible to patients and navigators in various stages of navigating cancer survivorship or a recent diagnosis. 

DATA SOURCES AND METHODS

Data come from two waves of the National Cancer Institute’s (NCI) Health Information National Trends Survey (HINTS). Since 2003, NCI has conducted the HINTS to assess the impacts of health communication, specifically measuring: how people access and use health information, how people use information technology to manage their health and health information, and the degree to which people are engaged in health behaviors. The Office of the Assistant Secretary for Technology Policy (ASTP) works with NCI to develop survey content related to individuals’ access and use of information contained in their online medical records.

This brief pooled data from HINTS 5, Cycle 4 (2020) and HINTS 6 (2022) to achieve a more robust sample of individuals with a recent or prior cancer diagnosis. HINTS 5, Cycle 4 was a single-mode mail survey fielded February through June 2020. HINTS 6 (2022) was fielded as both a paper and web-based survey in March through November 2022. The sample design for each survey consisted of two-stages. In the first stage, a stratified sample of addresses were selected from a file of residential addresses. In the second-stage, one adult was selected within each sampled household. The sampling frame consisted of a database of addresses used by Marketing Systems Group (MSG) to provide a random sample of addresses. For HINTS 5, Cycle 4, complete data were collected from 3,865 respondents and the final response rate was 37%. For HINTS 6, complete data were collected from 6,252 respondents and the final response rate was 28%. All results were weighted to account for non-response and generate national estimates. More details regarding sample selection, data collection, and weighting can be found in the Methodology Reports on the  HINTS website .

• National Cancer Institute. Cancer Statistics [Internet]. Bethesda (MD): National Cancer Institute. Available from: https://www.cancer.gov/about-cancer/understanding/statistics.
• The White House. WHAT THEY ARE SAYING: As Part of the Cancer Moonshot, First Lady Jill Biden, Leading Health Insurers & Oncology Practices Nationwide Highlight New Actions to Expand Patient Navigation [Internet]. Washington (DC): The White House. Available from: https://www.whitehouse.gov/briefing-room/statements-releases/2024/03/27/what-they-are-saying-as-part-of-the-cancer-moonshot-first-lady-jill-biden-leading-health-insurers-oncology-practices-nationwide-highlight-new-actions-to-expand-patient-navigation/ .
• Strawley C. and Richwine C. Individuals’ Access and Use of Patient Portals and Smartphone Health Apps, 2022. Office of the Assistant Secretary for Technology Policy and Office of the National Coordinator for Health Information Technology. Data Brief: 69. 2023. Available from: Individuals’ Access and Use of Patient Portals and Smartphone Health Apps, 2022 | HealthIT.gov .
• Richwine, C. Progress and Persistent Disparities in Patient Access to Electronic Health Information. JAMA Health Forum. 2023;4(11). Available from: Progress and Persistent Disparities in Patient Access to Electronic Health Information | Health Policy | JAMA Health Forum | JAMA Network .
• Office of the Assistant Secretary for Technology Policy. The ONC Cures Act Final Rule: Delivering on the Patient’s Right to Their Medical Records and Promoting a Modern Health App Economy [Internet]. Washington (DC): Office of the Assistant Secretary for Technology Policy. Available from: TheONCCuresActFinalRule.pdf (healthit.gov)
• Zaidi M, Amante DJ, Anderson E, Ito Fukunaga M, Faro JM, Frisard C, Sadasivam RS, Lemon SC. Association Between Patient Portal Use and Perceived Patient-Centered Communication Among Adults With Cancer: Cross-sectional Survey Study. JMIR Cancer. 2022 Aug 9;8(3). Available from: Association Between Patient Portal Use and Perceived Patient-Centered Communication Among Adults With Cancer: Cross-sectional Survey Study - PMC (nih.gov)
• Stewart MT, Hogan TP, Nicklas J, Robinson SA, Purington CM, Miller CJ, Vimalananda VG, Connolly SL, Wolfe HL, Nazi KM, Netherton D, Shimada SL. The Promise of Patient Portals for Individuals Living With Chronic Illness: Qualitative Study Identifying Pathways of Patient Engagement. J Med Internet Res 2020;22(7). Available from: Journal of Medical Internet Research - The Promise of Patient Portals for Individuals Living With Chronic Illness: Qualitative Study Identifying Pathways of Patient Engagement (jmir.org) .

ACKNOWLEDGEMENTS

The authors are with the Office of Standards, Certification, and Analysis, within the Office of the Assistant Secretary for Technology Policy (ASTP). The data brief was drafted under the direction of Mera Choi, Director of the Technical Strategy and Analysis Division, Vaishali Patel, Deputy Director of the Technical Strategy and Analysis Division, and Wesley Barker, Chief of the Data Analysis Branch.

SUGGESTED CITATION

Richwine C. Access and Use of Electronic Health Information by Individuals with Cancer: 2020-2022. Office of the Assistant Secretary for Technology Policy. Data Brief: 73. September 2024.

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