On-Line Patient Portal Use By Caregivers in Pediatric Oncology: Are We Widening Sociodemographic Disparities?

BACKGROUND: Financial and regulatory incentives stemming from the Health Information Technology for Economic and Clinic Health Act have encouraged and, hence, increased the availability of online patient portals ('portals') that connect to electronic health records. Through portals, caregivers have direct access to portions of their child's medical record. Direct access is intended to engage caregivers in treatment and, consequently, to improve disease management. However, demonstrated associations between portal use and engagement in care is limited within pediatrics and non-existent in pediatric oncology. Caregivers of children with cancer have increased anxiety in response to their child's diagnosis and treatment (Myers et al, Cancer, 2014). Allowing caregivers swift access to results via portals may reduce anxiety for some, however, complicated written material may exacerbate anxiety and cause confusion (Schultz, et al, Pediatric Blood & Cancer, 2018). Furthermore, differences in sociodemographic variables between portal users and non-users potentially highlights widening healthcare disparities. Little is known about the use of portals by caregivers of children with cancer or what effect use may have on caregivers. As a first step, this study sought to examine whether sociodemographic and clinical care variables are associated with portal activation in a pediatric oncology sample. METHODS: Data were extracted from the electronic health records of pediatric oncology patients diagnosed or treated for their first known cancer within Nemours Center for Cancer and Blood Disorders in the Delaware Valley from January 1, 2012 through June 30, 2017. Sociodemographic variables (patient age, gender, race, preferred language, insurance, zip-code), clinical characteristics (cancer type, date of diagnosis, total number of laboratory and radiology tests within the study period), and portal activation date were gathered. A cost of living index (COLI) was computed using zip-code data. Cancer type was classified as "liquid" or "solid" based on chemotherapy and radiology follow-up procedures. Those who activated the portal more than 30 days before a cancer diagnosis were excluded from evaluation to better isolate portal activation related to cancer diagnosis. Data were summarized with descriptive statistics. Chi-square and independent samples t-tests compared those who did and did not activate the portal. RESULTS: The initial sample included 445 children; 73 families activated the portal more than 30 days before cancer diagnosis. Of the remaining 372 patients, 197 families (53%) activated the portal. Those who activated did not differ from those who did not in regard to patient age, gender, COLI, or type of cancer. Those who were of non-majority race, spoke a language other than English, and did not have private insurance were overrepresented among those who did not activate (TABLE). Families of children undergoing more radiology and lab tests were more likely to activate. For those who activated the portal, 39% did so within 1 month of diagnosis (day -30 to day +30), 13% did so from day +31 to +90, 36% did so from day +91 to +365, and 11% did so greater than 366 days post diagnosis. CONCLUSION: There are significant differences in patient portal activation by race, preferred language, and type of insurance. These results suggest sociodemographic disparities in portal activation, similar to patterns found in our pediatric primary care network (Ketterer et al, Academic Pediatrics, 2013). In that sample, however, only 26% of patients activated accounts in contrast to the 53% of families in pediatric oncology activating accounts. In our sample, while general type of cancer was not associated with portal activation, greater burden of treatment evaluation was. This study is the initial step in a program of research evaluating the use, utility, and outcomes of portal use in pediatric oncology. Further work will include evaluation of patterns of portal usage along with evaluations of health literacy and portal related anxiety. As portals become more ubiquitous, we must better understand how they are used and mitigate any disparities in or ill effects of access to this information. Disclosures No relevant conflicts of interest to declare.

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Patients’ moral attitudes toward electronic health records: Survey study with vignettes and statements

Health Informatics Journal ◽

10.1177/1460458220980039 ◽

2021 ◽

Vol 27 (1) ◽

pp. 146045822098003

Author(s):

Tania Moerenhout ◽

Ignaas Devisch ◽

Laetitia Cooreman ◽

Jodie Bernaerdt ◽

An De Sutter ◽

...

Keyword(s):

Electronic Health Records ◽

De Novo ◽

Information Access ◽

Survey Study ◽

Sensitive Information ◽

Patient Portal ◽

Care Providers ◽

Health Records ◽

Electronic Health ◽

Moral Attitudes

Patient access to electronic health records gives rise to ethical questions related to the patient-doctor-computer relationship. Our study aims to examine patients’ moral attitudes toward a shared EHR, with a focus on autonomy, information access, and responsibility. A de novo self-administered questionnaire containing three vignettes and 15 statements was distributed among patients in four different settings. A total of 1688 valid questionnaires were collected. Patients’ mean age was 51 years, 61% was female, 50% had a higher degree (college or university), and almost 50% suffered from a chronic illness. Respondents were hesitant to hide sensitive information electronically from their care providers. They also strongly believed hiding information could negatively affect the quality of care provided. Participants preferred to be informed about negative test results in a face-to-face conversation, or would have every patient decide individually how they want to receive results. Patients generally had little experience using patient portal systems and expressed a need for more information on EHRs in this survey. They tended to be hesitant to take up control over their medical data in the EHR and deemed patients share a responsibility for the accuracy of information in their record.

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Abstract P148: Heart Disease Among Breast Cancer Patients

Circulation ◽

10.1161/circ.137.suppl_1.p148 ◽

2018 ◽

Vol 137 (suppl_1) ◽

Author(s):

Tekeda F Ferguson ◽

Sunayana Kumar ◽

Denise Danos

Keyword(s):

Breast Cancer ◽

Heart Disease ◽

Electronic Health Records ◽

Cancer Patients ◽

Cancer Diagnosis ◽

Breast Cancer Diagnosis ◽

Health Concern ◽

Breast Cancer Patients ◽

Health Records ◽

Electronic Health

Purpose: In conjunction with women being diagnosed earlier with breast cancer and a rapidly aging population, advances in cancer therapies have swiftly propelled cardiotoxicity as a major health concern for breast cancer patients. Frequent cardiotoxicity outcomes include: reduced left ventricular ejection fraction (LVEF), myocardial infarction, asymptomatic or hospitalized heart failure, arrhythmias, hypertension, and thromboembolism. The purpose of this study was to use an electronic health records system determine if an increased odds of heart disease was present among women with breast cancer. Methods: Data from the Research Action for Health Network (REACHnet) was used for the analysis. REACHnet is a clinical data research network that uses the common data model to extract electronic health records (EHR) from health networks in Louisiana (n=100,000).Women over the age of 30 with data (n=35,455) were included in the analysis. ICD-9 diagnosis codes were used to classify heart disease (HD) (Hypertensive HD, Ischemic HD, Pulmonary HD, and Other HD) and identify breast cancer patients. Additional EHR variables considered were smoking status, and patient vitals. Chi-square tests, crude, and adjusted logistic regression models were computed utilizing SAS 9.4. Results: Utilizing diagnoses codes our study team has estimated 28.6% of women over the age of 30 with a breast cancer diagnosis (n=816) also had a heart disease diagnosis, contrasted with 15.6% of women without a breast cancer diagnosis. Among patients with heart disease, there was no significant difference in the distribution of the type of heart disease diagnoses by breast cancer status (p=0.87). There was a 2.21 (1.89, 2.58) crude odds ratio of having a CVD diagnoses among breast cancer cases when referenced to cancer free women. After adjusting for age (30-49, 50-64, 65+), race (black/white), and comorbidities (obesity/overweight, diabetes, current smoker) there was an increased risk of heart disease (OR: 1.24 (1.05, 1.47)). Conclusion: The short-term and long-term consequences of cardiotoxicity on cancer treatment risk-to-benefit ratio, survivorship issues, and competing causes of mortality are increasingly being acknowledged. Our next efforts will include making advances in predictive risk modeling. Maximizing benefits while reducing cardiac risks needs to become a priority in oncologic management and monitoring for late-term toxic effects.

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Online patient portal use by caregivers in pediatric oncology: Are we widening sociodemographic disparities?

Pediatric Blood & Cancer ◽

10.1002/pbc.29373 ◽

2021 ◽

Author(s):

Corinna L. Schultz ◽

Suzanne M. McCahan ◽

Amanda M. Lewis ◽

H. Timothy Bunnell ◽

Melissa A. Alderfer

Keyword(s):

Pediatric Oncology ◽

Patient Portal ◽

Sociodemographic Disparities

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Patient Portal Use Among Older Adults: What Is Really Happening Nationwide?

Journal of Applied Gerontology ◽

10.1177/0733464818776125 ◽

2018 ◽

Vol 39 (4) ◽

pp. 442-450 ◽

Cited By ~ 8

Author(s):

Eun-Shim Nahm ◽

Shijun Zhu ◽

Michele Bellantoni ◽

Linda Keldsen ◽

Kathleen Charters ◽

...

Keyword(s):

Older Adults ◽

Electronic Health Records ◽

Older Adult ◽

Chronic Conditions ◽

Patient Portal ◽

Perceived Benefits ◽

Community Settings ◽

Patient Portals ◽

Health Records ◽

Current State

Patient portals (PPs), secure websites that allow patients to access their electronic health records and other health tools, can benefit older adults managing chronic conditions. However, studies have shown a lack of PP use in older adults. Little is known about the way they use PPs in community settings and specific challenges they encounter. The aim of this study was to examine the current state of PP use in older adults, employing baseline data (quantitative and qualitative) from an ongoing nationwide online trial. The dataset includes 272 older adults (mean age, 70.0 years [50-92]) with chronic conditions. Findings showed that the majority of participants (71.3%) were using one or more PPs, but in limited ways. Their comments revealed practical difficulties with managing PPs, perceived benefits, and suggestions for improvement. Further studies with different older adult groups (e.g., clinic patients) will help develop and disseminate more usable PPs for these individuals.

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Prevalence of COVID-19-related risk factors and risk of severe influenza outcomes in cancer survivors: a matched cohort study using linked English electronic health records data

10.1101/2020.10.08.20209304 ◽

2020 ◽

Author(s):

Helena Carreira ◽

Helen Strongman ◽

Maria Peppa ◽

Helen I McDonald ◽

Isabel dos-Santos-Silva ◽

...

Keyword(s):

Risk Factors ◽

Cohort Study ◽

Electronic Health Records ◽

Cancer Survivors ◽

Cancer Diagnosis ◽

Risk Groups ◽

Matched Cohort ◽

Health Records ◽

Severe Influenza ◽

Clinical Risk Groups

AbstractBackgroundPeople with active cancer are recognised as at risk of COVID-19 complications, but it is unclear whether the much larger population of cancer survivors is at elevated risk. We aimed to address this by comparing cancer survivors and cancer-free controls for (i) prevalence of comorbidities considered risk factors for COVID-19; and (ii) risk of severe influenza, as a marker of susceptibility to severe outcomes from epidemic respiratory viruses.MethodsWe included survivors (≥1 year) of the 20 most common cancers, and age, sex and general practice-matched cancer-free controls, derived from UK primary care data linked to cancer registrations, hospital admissions and death registrations. Comorbidity prevalences were calculated 1 and 5 years from cancer diagnosis. Risk of hospitalisation or death due to influenza was compared using Cox models adjusted for baseline demographics and comorbidities.Findings108,215 cancer survivors and 523,541 cancer-free controls were included. Cancer survivors had more asthma, other respiratory, cardiac, diabetes, neurological, renal, and liver disease, and less obesity, compared with controls, but there was variation by cancer site. There were 205 influenza hospitalisations/deaths, with cancer survivors at higher risk than controls (adjusted HR 2.78, 95% CI 2.04-3.80). Haematological cancer survivors had large elevated risks persisting for >10 years (HR overall 15.17, 7.84-29.35; HR >10 years from cancer diagnosis 10.06, 2.47-40.93). Survivors of other cancers had evidence of raised risk up to 5 years from cancer diagnosis only (HR 2.22, 1.31-3.74).InterpretationRisks of severe COVID-19 outcomes are likely to be elevated in cancer survivors. This should be taken into account in policies targeted at clinical risk groups, and vaccination for both influenza, and, when available, COVID-19, should be encouraged in cancer survivors.FundingWellcome Trust, Royal Society, NIHR.Research in contextEvidence before this studyFew data are available to date on how COVID-19 affects cancer survivors. We searched PubMed with the keywords “influenza cancer survivors” to identify studies that compared severe influenza outcomes in cancer survivors and in a control group. No study was identified.Added value of this studyIn this matched cohort study of routinely collected electronic health records, we demonstrated raised risks of influenza hospitalisation or mortality in survivors from haematological malignancies for >10 years after diagnosis, and in survivors from solid cancers up to 5 years after diagnosis.Implications of all the available evidenceCancer survivorship appears to be an important risk factor for severe influenza outcomes, suggesting that cancer survivors may also be at raised risk of poor COVID-19 outcomes. This should be taken into account in public health policies targeted at protecting clinical risk groups. Influenza vaccination should be encouraged in this group, and may need to be extended to a wider population of medium- to long-term cancer survivors than currently recommended.

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Validating drug repurposing signals using electronic health records: a case study of metformin associated with reduced cancer mortality

Journal of the American Medical Informatics Association ◽

10.1136/amiajnl-2014-002649 ◽

2014 ◽

Vol 22 (1) ◽

pp. 179-191 ◽

Cited By ~ 54

Author(s):

Hua Xu ◽

Melinda C Aldrich ◽

Qingxia Chen ◽

Hongfang Liu ◽

Neeraja B Peterson ◽

...

Keyword(s):

Type 2 Diabetes ◽

Electronic Health Records ◽

Cancer Patients ◽

Cancer Diagnosis ◽

Cancer Mortality ◽

Mayo Clinic ◽

Drug Repurposing ◽

Diabetic Patients ◽

Health Records

Abstract Objectives Drug repurposing, which finds new indications for existing drugs, has received great attention recently. The goal of our work is to assess the feasibility of using electronic health records (EHRs) and automated informatics methods to efficiently validate a recent drug repurposing association of metformin with reduced cancer mortality. Methods By linking two large EHRs from Vanderbilt University Medical Center and Mayo Clinic to their tumor registries, we constructed a cohort including 32 415 adults with a cancer diagnosis at Vanderbilt and 79 258 cancer patients at Mayo from 1995 to 2010. Using automated informatics methods, we further identified type 2 diabetes patients within the cancer cohort and determined their drug exposure information, as well as other covariates such as smoking status. We then estimated HRs for all-cause mortality and their associated 95% CIs using stratified Cox proportional hazard models. HRs were estimated according to metformin exposure, adjusted for age at diagnosis, sex, race, body mass index, tobacco use, insulin use, cancer type, and non-cancer Charlson comorbidity index. Results Among all Vanderbilt cancer patients, metformin was associated with a 22% decrease in overall mortality compared to other oral hypoglycemic medications (HR 0.78; 95% CI 0.69 to 0.88) and with a 39% decrease compared to type 2 diabetes patients on insulin only (HR 0.61; 95% CI 0.50 to 0.73). Diabetic patients on metformin also had a 23% improved survival compared with non-diabetic patients (HR 0.77; 95% CI 0.71 to 0.85). These associations were replicated using the Mayo Clinic EHR data. Many site-specific cancers including breast, colorectal, lung, and prostate demonstrated reduced mortality with metformin use in at least one EHR. Conclusions EHR data suggested that the use of metformin was associated with decreased mortality after a cancer diagnosis compared with diabetic and non-diabetic cancer patients not on metformin, indicating its potential as a chemotherapeutic regimen. This study serves as a model for robust and inexpensive validation studies for drug repurposing signals using EHR data.

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Leveraging Electronic Health Records to Improve Management of Noncommunicable Diseases at Primary Healthcare Centres in Saudi Arabia: A Qualitative Study

10.21203/rs.3.rs-109410/v1 ◽

2020 ◽

Author(s):

Ahmed Hazazi ◽

Andrew Wilson

Keyword(s):

Chronic Disease ◽

Electronic Health Records ◽

Primary Healthcare ◽

Noncommunicable Diseases ◽

Patient Portal ◽

Structured Interviews ◽

Health Records ◽

Public And Private ◽

Patient Documentation ◽

Electronic Health

Abstract Background: Electronic Health Records (EHRs) can contribute to the earlier detection and better treatment of chronic diseases by improving accuracy and accessibility of patient data. The Saudi Ministry of Health implemented an EHR system in all primary health care clinics (PHCs) as part of measures to improve their performance in managing chronic disease. This study examined the perspective of physicians on the current scope and content of NCDs management at PHCs including the contribution of the EHR system. Methods: Semi-structured interviews were conducted with 22 physicians working in chronic disease clinics at PHCs covering a range of locations and clinic sizes. The participants were selected based on their expertise using a combination of purposive and convenience sampling. The interviews were transcribed, analyzed and coded into the key themes. Results: Physicians indicated that the availability of the EHR helped organise their work and positively influenced NCDs patient encounters in their PHCs. They emphasised the multiple benefits of EHR in terms of efficiency, including the accuracy of patient documentation and the availability of patient information. Shortcomings identified included the lack of a patient portal to allow patients to access information about their health and lack of capacity to facilitate multi-disciplinary care for example through referral to allied health services. Access to the EHR was limited to MOH primary healthcare centres and clinicians noted that patients also received care in private clinics and hospitals. Conclusion: While well regarded by clinicians, the EHR system impact on patient care at chronic disease clinics is not being fully realised. Enabling patient access to their EHR would be help promote self-management, a core attribute of effective NCD management. Co-ordination of care is another core attribute and in the Saudi health system with multiple public and private providers, this may be substantially improved if the patients EHR was accessible wherever care was provided. There is also a need for enhanced capacity to support improving patient’s nutrition and physical activity.

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COVID-19 effect on cancer diagnosis: A retrospective comparative analysis.

Journal of Clinical Oncology ◽

10.1200/jco.2021.39.15_suppl.e18506 ◽

2021 ◽

Vol 39 (15_suppl) ◽

pp. e18506-e18506

Author(s):

Meytal Shtayer Fabrikant ◽

Christian Miller ◽

Christiane Morecock ◽

Brooke Burgess ◽

Christina Darwish ◽

...

Keyword(s):

Cancer Diagnosis ◽

The United States ◽

Screening Tools ◽

Age At Diagnosis ◽

Cancer Site ◽

Cancer Type ◽

Time Period ◽

Hispanic Patients ◽

Chi Square Analysis ◽

Zip Code

e18506 Background: In response to the COVID-19 pandemic, many health systems postponed routine screening and care to conserve resources and reduce patient exposure. As a result, several studies have shown a decline in the diagnosis of new cancer cases, a process that relies heavily on the use of screening tools and modalities. The Washington D.C. area is home to a heterogeneous patient population and one of the highest income gaps in the United States. Patterns in healthcare inequality in the area mirror these disparities. This study aims to identify the impact of the COVID-19 pandemic on cancer diagnosis rates compared to prior years and analyze whether vulnerable populations in the D.C. area were disproportionately affected. Methods: Data was collected from the George Washington University (GWU) Cancer Registry. The study population included patients age 18 and up residing in D.C., Maryland or Virginia who were diagnosed with any cancer at the GWU Health System within the following date ranges: April 1 to September 30 of 2018, 2019, 2020 and September 1, 2019 to February 29, 2020. Data collected included age at diagnosis, race, ethnicity, cancer site, stage at diagnosis, and patient zip code as a proxy for socioeconomic status (SES). Median income by zip code was labeled as low, middle or high. Chi square analysis was used to compare changes in each of these demographic and SES categories between each time frame. Results: There were 372 new cancer diagnoses during the COVID-19 period, April 1 2020 to September 30 2020. During this time period in 2018 and 2019, there were 525 and 539 new cancer diagnoses, respectively. Immediately prior to the COVID-19 period, September 1 2019 to February 29 2020, there were 588 new cancer diagnoses. Patterns of cancer type, age at diagnosis, sex, clinical stage, pathological stage and SES did not significantly differ between the COVID-19 period and any other time period (p > 0.05 for all categories). However, ethnicity did change significantly with a slight increase in the number of Hispanic patients diagnosed during the COVID-19 period as compared to the 2018 and 2019 time periods (p = 0.041) and the September 2019 to February 2020 time period (p = 0.0005). Conclusions: Through this retrospective analysis, we observed a decrease in new cancer diagnoses during the COVID-19 period with no significant differences in patient age, sex, cancer type, cancer stage or SES. There was a slight increase in cancer diagnoses among Hispanic patients during the COVID-19 period. These results suggest that most groups were equally impacted by the COVID-19 pandemic with respect to cancer diagnosis. However, this may be specific to the region we studied and limited by the population size and our means of collecting data about patient SES. Further studies comparing early and late impacts of COVID-19 on cancer care will be important to identify specific communities for targeted outreach and intervention.

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