Is Canada ready for patient accessible electronic health records? A national scan.
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ABSTRACT:
SUBMITTER: Urowitz S
PROVIDER: S-EPMC2532996 | biostudies-literature | 2008 Jul
REPOSITORIES: biostudies-literature
Publications
Is Canada ready for patient accessible electronic health records? A national scan.
Urowitz Sara S Wiljer David D Apatu Emma E Eysenbach Gunther G Delenardo Claudette C Harth Tamara T Pai Howard H Leonard Kevin J KJ
BMC medical informatics and decision making 20080724
<h4>Background</h4>Access to personal health information through the electronic health record (EHR) is an innovative means to enable people to be active participants in their own health care. Currently this is not an available option for consumers of health. The absence of a key technology, the EHR, is a significant obstacle to providing patient accessible electronic records. To assess the readiness for the implementation and adoption of EHRs in Canada, a national scan was conducted to determine ...[more]
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Project description:BACKGROUND:Internationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients' experiences of using PAEHRs in Sweden or Europe, more generally. OBJECTIVE:The objective of our study was to investigate patients' experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system. METHODS:A national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents. RESULTS:Overall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one's health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen. CONCLUSIONS:In this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way-several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.
| S-EPMC6238103 | biostudies-literature
Project description: Not available
| S-EPMC8871105 | biostudies-literature
Project description:BackgroundElectronic health records (EHRs) provide rich data on many domains not routinely available in other data, as such, they are a promising source to study changes in health outcomes using longitudinal study designs (eg, cohort studies, natural experiments, etc.). Yet, patient attrition rates in these data are unknown.ObjectiveThe objective of this study was to estimate overall and among adults with diabetes or hypertension: (1) patient attrition over a 3-year period at community health centers; and (2) the likelihood that patients with Medicaid permanently switched their source of primary care.Research designA retrospective cohort study of 2012-2017 data from the Accelerating Data Value Across a National Community Health Center Network (ADVANCE) Clinical Data Research Network of community health centers were used to assess EHR data attrition. Oregon Medicaid enrollment and claims data were used to estimate the likelihood of changing the source of primary care.SubjectsA total of 827,657 patients aged 19-64 with ≥1 ambulatory visit from 76 community health center systems across 20 states. In all, 232,891 Oregon Medicaid enrollees (aged 19-64) with a gap of ≥6 months following a claim for a visit billed to a primary care source.MeasuresPercentage of patients not returning within 3 years of their qualifying visit (attrition). The probability that a patient with Medicaid permanently changed their primary care source.ResultsAttrition over the 3 years averaged 33.5%; attrition rates were lower (<25%) among patients with diabetes and/or hypertension. Among Medicaid enrollees, the percentage of provider change after a 6-month gap between visits was 12% for community health center patients compared with 39% for single-provider practice patients. Over 3 years, the likelihood of a patient changing to a new provider increased with length of time since their last visit but remained lowest among community health center patients.ConclusionThis study demonstrates the use of the EHR dataset is a reliable source of data to support longitudinal studies while highlighting variability in attrition by primary care source and chronic conditions.
| S-EPMC7365658 | biostudies-literature
Project description:Introduction: To evaluate unmet clinical need in unselected hypertrophic cardiomyopathy (HCM) patients to determine the risk of a wide range of subsequent cardiovascular disease endpoints and safety endpoints relevant for trial design.Methods: Population based cohort (CALIBER, linked primary care, hospital and mortality records in England, period 1997-2010), all people diagnosed with HCM were identified and matched by age, sex and general practice with ten randomly selected people without HCM. Random-effects Poisson models were used to assess the associations between HCM and cardiovascular diseases and bleeding.Results: Among 3,290,455 eligible people a diagnosis of hypertrophic cardiomyopathy was found in 4 per 10,000. Forty-one percent of the 1,160 individuals with hypertrophic cardiomyopathy were women and the median age was 57 years. The median follow-up was 4.0 years. Compared to general population controls, people with HCM had higher risk of ventricular arrhythmia (incidence rate ratio = 23.53, [95% confidence interval 12.67-43.72]), cardiac arrest or sudden cardiac death (6.33 [3.69-10.85]), heart failure (4.31, [3.30-5.62]), and atrial fibrillation (3.80 [3.04-4.75]). HCM was also associated with a higher incidence of myocardial infarction ([MI] 1.90 [1.27-2.84]) and coronary revascularisation (2.32 [1.46-3.69]).The absolute Kaplan-Meier risks at 3 years were 8.8% for the composite endpoint of cardiovascular death or heart failure, 8.4% for the composite of cardiovascular death, stroke or myocardial infarction, and 1.5% for major bleeding.Conclusions: Our study identified major unmet need in HCM and highlighted the importance of implementing improved cardiovascular prevention strategies to increase life-expectancy of the contemporary HCM population. They also show that national electronic health records provide an effective method for identifying outcomes and clinically relevant estimates of composite efficacy and safety endpoints essential for trial design in rare diseases.
| S-EPMC5764451 | biostudies-literature
Project description:BackgroundEHR phenotyping offers the ability to rapidly assemble a precisely defined cohort of patients prescreened for eligibility to participate in health-related research. Even so, stakeholders in the process must still contend with the practical and ethical challenges associated with research recruitment. Patient perspectives on these matters are particularly important given that the success of research recruitment depends on patients' willingness to participate.MethodsWe conducted 15 focus groups (n =?110 participants) in four counties in diverse regions of the southeastern US: Appalachia, the Mississippi Delta, and the Piedmont area of North Carolina. Based on a hypothetical study of a behavioral intervention for type 2 diabetes, we asked about the acceptability and appropriateness of direct investigator versus physician-mediated contact with patients for research recruitment, and whether patients should be asked to opt in or opt out of further contact in response to recruitment letters.ResultsFor initial contact, nearly all participants said it would be acceptable for researchers to contact patients directly and three-fourths said that it would be acceptable for researchers to contact patients through their physicians. When we asked which would be most appropriate, a substantial majority chose direct contact. Themes that arose in the discussion included trust and transparency, decision-making power, the effect on research, and the effect on patient care. For response expectations, the vast majority of participants said both opt-in and opt-out would be acceptable-typically finding neither especially problematic and noting that both afford patients the opportunity to make their own decisions.ConclusionsExternal validity relies heavily on researchers' success enrolling eligible patients and failure to reach accrual targets is a costly and common barrier to advancing scientific knowledge. Our results suggest that patients recognize multiple advantages and disadvantages of different research recruitment strategies and place value on the implications not just for themselves, but also for researchers and healthcare providers. Our findings, including rich qualitative detail, contribute to the body of empirical and ethical literature on improving research recruitment and suggest specific ways forward as well as important areas for future research.
| S-EPMC6390331 | biostudies-literature
Project description:BackgroundMedicine 2.0-the adoption of Web 2.0 technologies such as social networks in health care-creates the need for apps that can find other patients with similar experiences and health conditions based on a patient's electronic health record (EHR). Concurrently, there is an increasing number of longitudinal EHR data sets with rich information, which are essential to fulfill this need.ObjectiveThis study aimed to evaluate the hypothesis that we can leverage similar EHRs to predict possible future medical concepts (eg, disorders) from a patient's EHR.MethodsWe represented patients' EHRs using time-based prefixes and suffixes, where each prefix or suffix is a set of medical concepts from a medical ontology. We compared the prefixes of other patients in the collection with the state of the current patient using various interpatient distance measures. The set of similar prefixes yields a set of suffixes, which we used to determine probable future concepts for the current patient's EHR.ResultsWe evaluated our methods on the Multiparameter Intelligent Monitoring in Intensive Care II data set of patients, where we achieved precision up to 56.1% and recall up to 69.5%. For a limited set of clinically interesting concepts, specifically a set of procedures, we found that 86.9% (353/406) of the true-positives are clinically useful, that is, these procedures were actually performed later on the patient, and only 4.7% (19/406) of true-positives were completely irrelevant.ConclusionsThese initial results indicate that predicting patients' future medical concepts is feasible. Effectively predicting medical concepts can have several applications, such as managing resources in a hospital.
| S-EPMC7395257 | biostudies-literature
Project description:BackgroundHepatorenal syndrome (HRS) is among the leading causes of hospitalization and mortality in patients with chronic liver disease.ObjectiveTo assess the HRS patient journey from preadmission to postdischarge to understand patient characteristics, disease progression, treatment patterns, and outcomes.MethodsWe conducted a retrospective study using real-world data from a nationwide electronic health record database (Cerner Health Facts, Kansas City, Missouri). We used ICD-9/10 diagnosis codes to identify patients hospitalized with HRS between January 1, 2009, and January 31, 2018. We assessed patient characteristics and history, clinical presentation, treatment, and outcomes. Regression analysis was conducted to assess the association between patient characteristics and survival while adjusting for demographic and clinical covariates.ResultsThe study included 3563 patients (62% men). Precipitants of HRS included gastrointestinal bleeding (18%), diuretics and infections (30%), and paracentesis (26%). Although 21% of patients had liver injury exclusively associated with alcohol use, 20% had hepatitis C, 8% had nonalcoholic steatohepatitis, and the etiology of the remainder (51%) was either some combination of conditions or unknown. A total of 42% of patients received vasopressors, including octreotide and midodrine (10%), other combinations of vasopressors (11%), or another single vasopressor (21%). In-hospital mortality was 34%, and 14% of patients were discharged to hospice. Regression analysis showed patients with acute-on-chronic liver failure had higher mortality in acute-on-chronic liver failure grades 1 (odds ratio = 1.59), 2 (odds ratio = 2.49), and 3 (odds ratio = 4.53) versus no acute-on-chronic liver failure. Among survivor patients, 38% were readmitted within 90 days of discharge; 23% of readmissions were HRS-related.ConclusionsThe HRS patient journey presented in this study highlights inconsistencies in, and provides insight into, associated hospital-based treatment strategies. A mortality rate of 34% along with a readmission rate of 23% associated with HRS-related complications warrant more disease awareness and effective treatment. Further research is needed to examine the interactions between the etiology of cirrhosis, precipitants, treatment, and outcomes. (Curr Ther Res Clin Exp. 2022; 82:XXX-XXX).
| S-EPMC8987804 | biostudies-literature
Project description:BackgroundHistorically, the terms sex and gender have been used interchangeably as a binary attribute to describe a person as male or female, even though there is growing recognition that sex and gender are distinct concepts. The lack of sex and gender delineation in electronic health records (EHRs) may be perpetuating the inequities experienced by the transgender and gender nonbinary (TGNB) populations.ObjectiveThis study aims to conduct an environmental scan to understand how sex and gender are defined and implemented in existing Canadian EHRs and current international health information standards.MethodsWe examined public information sources on sex and gender definitions in existing Canadian EHRs and international standards communities. Definitions refer to data element names, code systems, and value sets in the descriptions of EHRs and standards. The study was built on an earlier environment scan by Canada Health Infoway, supplemented with sex and gender definitions from international standards communities. For the analysis, we examined the definitions for clarity, consistency, and accuracy. We also received feedback from a virtual community interested in sex-gender EHR issues.ResultsThe information sources consisted of public website descriptions of 52 databases and 55 data standards from 12 Canadian entities and 10 standards communities. There are variations in the definition and implementation of sex and gender in Canadian EHRs and international health information standards. There is a lack of clarity in some sex and gender concepts. There is inconsistency in the data element names, code systems, and value sets used to represent sex and gender concepts across EHRs. The appropriateness and adequacy of some value options are questioned as our societal understanding of sexual health evolves. Outdated value options raise concerns about current EHRs supporting the provision of culturally competent, safe, and affirmative health care. The limited options also perpetuate the inequities faced by the TGNB populations. The expanded sex and gender definitions from leading Canadian organizations and international standards communities have brought challenges in how to migrate these definitions into existing EHRs. We proposed 6 high-level actions, which are to articulate the need for this work, reach consensus on sex and gender concepts, reach consensus on expanded sex and gender definitions in EHRs, develop a coordinated action plan, embrace EHR change from socio-organizational and technical aspects to ensure success, and demonstrate the benefits in tangible terms.ConclusionsThere are variations in sex and gender concepts across Canadian EHRs and the health information standards that support them. Although there are efforts to modernize sex and gender concept definitions, we need decisive and coordinated actions to ensure clarity, consistency, and competency in the definition and implementation of sex and gender concepts in EHRs. This work has implications for addressing the inequities of TGNB populations in Canada.
| S-EPMC7688387 | biostudies-literature
Project description:BackgroundThe mission of medical schools is a sustainable commitment to orient education, research, and services based on the priorities and expectations of society. The most common complaints of patients from comprehensive health service centers (CHSCs) based on the data from electronic health records were assessed in order to determine primary health care (PHC) priorities for the educational planning of medical students in Iran.MethodsA population-based national study was designed to assess clinical complaints of patients in all age groups who were referred to CHSCs at least once to be visited by physicians. All the data in the census were extracted from electronic health records in PHC system during 2015-2020, classified by the International Classification of Primary Care 2nd edition (ICPC-2e-English), and statistically analyzed. The total number of complaints that were recorded in the system was 17,430,139.Results59% of the referring patients were women. The highest number of referrals was related to the age group of 18-59 years (56.9%), while the lowest belonged to the elderly people (13.3%). In all age and sex groups, the first ten complaints of patients with three top priorities in each category included process (follow-up, consultation, and results exam), digestive (toothache and gum complaint, abdominal pain, and diarrhea), respiratory (cough, sore throat, and runny nose), general (fever, pain, and weakness and fatigue), musculoskeletal (back pain, leg complaint, and knee injuries), endocrine and nutritional (weight gain, Feeding problem, and weight loss), cardiovascular (hypertension, palpitations, and Postural hypotension), neurological (headache, dizziness, and paralysis), sexual dysfunction (vaginal complaint, discharge, and irregular menstruation), and dermatological (pruritus, rash, and inflammation) problems.ConclusionHigh priorities in referring to PHC had a key role in assessing the country's health needs. Since this study was in line with the national pattern of complaints and patients' profile, the present findings can be helpful to amend policy-making, educational planning and curricula development in medical schools.
| S-EPMC9008379 | biostudies-literature
Project description:BackgroundInteroperable electronic health record (EHR) solutions are currently being implemented in Canada, as in many other countries. Understanding EHR users' perspectives is key to the success of EHR implementation projects. This Delphi study aimed to assess in the Canadian context the applicability, the importance, and the priority of pre-identified factors from a previous mixed-methods systematic review of international literature.MethodsA three-round Delphi study was held with representatives of 4 Canadian EHR user groups defined as partners of the implementation process who use or are expected to use EHR in their everyday activity. These groups are: non-physician healthcare professionals, health information professionals, managers, and physicians. Four bilingual online questionnaire versions were developed from factors identified by the systematic review. Participants were asked to rate the applicability and the importance of each factor. The main outcome measures were consensus and priority. Consensus was defined a priori as strong (≥ 75%) or moderate (≥ 60-74%) according to user groups' level of agreement on applicability and importance, partial (≥ 60%) when participants agreed only on applicability or importance, or as no consensus (< 60%). Priority for decision-making was defined as factors with strong consensus with scores of 4 or 5 on a five-point Likert scale for applicability and importance.ResultsThree Delphi rounds were completed by 64 participants. Levels of consensus of 100%, 64%, 64%, and 44% were attained on factors submitted to non-physician healthcare professionals, health information professionals, managers, and physicians, respectively. While agreement between and within user groups varied, key factors were prioritized if they were classified as strong (≥ 75% from questionnaire answers of user groups), for decision-making concerning EHR implementation. The 10 factors that were prioritized are perceived usefulness, productivity, motivation, participation of end-users in the implementation strategy, patient and health professional interaction, lack of time and workload, resources availability, management, outcome expectancy, and interoperability.ConclusionsAmongst all factors influencing EHR implementation identified in a previous systematic review, ten were prioritized through this Delphi study. The varying levels of agreement between and within user groups could mean that users' perspectives of each factor are complex and that each user group has unique professional priorities and roles in the EHR implementation process. As more EHR implementations in Canada are completed it will be possible to corroborate this preliminary result with a larger population of EHR users.
| S-EPMC3470948 | biostudies-literature