Dataset Information

Canadians' views on the use of routinely collected data in health research: a patient-oriented cross-sectional survey.

ABSTRACT: BACKGROUND:Little is known about Canadians' knowledge of and level of support for using administrative and other large, routinely collected data for health research, despite the benefits of this type of research to patients, health care systems and society. We sought to benchmark the views of Canadian adults on this topic. METHODS:Researchers and patient leaders of 3 joint and skin disease organizations codeveloped a cross-sectional online survey that was conducted between January and August 2017. The patient partners were engaged as full partners. Recruitment was mainly through the organizations' websites, email and social media. The survey captured respondents' initial perceptions, then (after background information on the topic was provided) elicited their views on the benefits of health research using routinely collected data, data access/privacy concerns, ongoing perceptions and educational needs. RESULTS:Of the 230 people who consented, 183 (79.6%) started the survey, and 151 (65.6%) completed the survey. Of the 151, 117 (77.5%) were women, 84 (55.6%) were British Columbians, 87 (57.6%) were university graduates, and 101 (66.9%) had a chronic disease. At the beginning of the survey, 119 respondents (78.8%) felt positively about the use of routinely collected data for health research. Respondents identified the ability to study long-term treatment effects and rare events (114 [75.5%]) and large numbers of people (110 [72.8%]) as key benefits. Deidentification of personal information was the top privacy measure (135 [89.4%]), and 101 respondents (66.9%) wanted to learn more about data stewards' granting access to data. On survey completion, more respondents (141 [93.4%]) felt positively about the use of routinely collected data, but only 87 (57.6%) were confident about data security and privacy. INTERPRETATION:Respondents generally supported the use of deidentified routinely collected data for health research. Although further investigation is needed with more representative samples, our findings suggest that additional education, especially about access and privacy controls, may enhance public support for research endeavours using these data.

SUBMITTER: McCormick N

PROVIDER: S-EPMC6450795 | biostudies-literature | 2019 Apr-Jun

REPOSITORIES: biostudies-literature

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Canadians' views on the use of routinely collected data in health research: a patient-oriented cross-sectional survey.

McCormick Natalie N Hamilton Clayon B CB Koehn Cheryl L CL English Kelly K Stordy Allan A Li Linda C LC

CMAJ open 20190404 2

<h4>Background</h4>Little is known about Canadians' knowledge of and level of support for using administrative and other large, routinely collected data for health research, despite the benefits of this type of research to patients, health care systems and society. We sought to benchmark the views of Canadian adults on this topic.<h4>Methods</h4>Researchers and patient leaders of 3 joint and skin disease organizations codeveloped a cross-sectional online survey that was conducted between January ...[more]

PMID: 30948649

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Project description:BackgroundIn recent years, studies that used routinely collected data (RCD), such as electronic medical records and administrative claims, for exploring drug treatment effects, including effectiveness and safety, have been increasingly published. Abstracts of such studies represent a highly attended source for busy clinicians or policy-makers, and are important for indexing by literature database. If less clearly presented, they may mislead decisions or indexing. We thus conducted a cross-sectional survey to systematically examine how the abstracts of such studies were reported.MethodsWe searched PubMed to identify all observational studies published in 2018 that used RCD for assessing drug treatment effects. Teams of methods-trained collected data from eligible studies using pilot-tested, standardized forms that were developed and expanded from "The reporting of studies conducted using observational routinely collected health data statement for pharmacoepidemiology" (RECORD-PE) statement. We used descriptive analyses to examine how authors reported data source, study design, data analysis, and interpretation of findings.ResultsA total of 222 studies were included, of which 118 (53.2%) reported type of database used, 17 (7.7%) clearly reported database linkage, and 140 (63.1%) reported coverage of data source. Only 44 (19.8%) studies stated a predefined hypothesis, 127 (57.2%) reported study design, 140 (63.1%) reported statistical models used, 142 (77.6%) reported adjusted estimates, 33 (14.9%) mentioned sensitivity analyses, and 39 (17.6%) made a strong claim about treatment effect. Studies published in top 5 general medicine journals were more likely to report the name of data source (94.7% vs. 67.0%) and study design (100% vs. 53.2%) than those in other journals.ConclusionsThe under-reporting of key methodological features in abstracts of RCD studies was common, which would substantially compromise the indexing of this type of literature and prevent the effective use of study findings. Substantial efforts to improve the reporting of abstracts in these studies are highly warranted.

Project description:BackgroundIndependent inquiries have identified that appropriate staffing in maternity units is key to enabling quality care and minimising harm, but optimal staffing levels can be difficult to achieve when there is a shortage of midwives. The services provided and how they are staffed (total staffing, skill-mix and deployment) have been changing, and the effects of workforce changes on care quality and outcomes have not been assessed. This study aims to explore the association between daily midwifery staffing levels and the rate of reported harmful incidents affecting mothers and babies.MethodsWe conducted a cross-sectional analysis of daily reports of clinical incidents in maternity inpatient areas matched with inpatient staffing levels for three maternity services in England, using data from April 2015 to February 2020. Incidents resulting in harm to mothers or babies was the primary outcome measure. Staffing levels were calculated from daily staffing rosters, quantified in Hours Per Patient Day (HPPD) for midwives and maternity assistants. Understaffing was defined as staffing below the mean for the service. A negative binomial hierarchical model was used to assess the relationship between exposure to low staffing and reported incidents involving harm.ResultsThe sample covered 106,904 maternal admissions over 46 months. The rate of harmful incidents in each of the three services ranged from 2.1 to 3.0 per 100 admissions across the study period. Understaffing by registered midwives was associated with an 11% increase in harmful incidents (adjusted IRR 1.110, 95% CI 1.002,1.229). Understaffing by maternity assistants was not associated with an increase in harmful incidents (adjusted IRR 0.919, 95% 0.813,1.039). Analysis of specific types of incidents showed no statistically significant associations, but most of the point estimates were in the direction of increased incidents when services were understaffed.ConclusionWhen there is understaffing by registered midwives, more harmful incidents are reported but understaffing by maternity assistants is not associated with higher risk of harms. Adequate registered midwife staffing levels are crucial for maintaining safety. Changes in the profile of maternity service workforces need to be carefully scrutinised to prevent mothers and babies being put at risk of avoidable harm.

Project description:OBJECTIVE:To describe parents' experience and views of the postmortem examination after the loss of a baby. DESIGN:Cross sectional survey. SETTING:Hospital with a dedicated bereavement counselling service, Newcastle upon Tyne. PARTICIPANTS:258 women who had attended a bereavement counselling service at the Royal Victoria Infirmary, Newcastle upon Tyne, on at least one occasion after losing a baby during pregnancy or infancy, between October 1996 and October 2000. METHOD:Self completion postal questionnaire incorporating fixed choice and open ended questions. MAIN OUTCOME MEASURES:Number of respondents who were asked if they would agree to a postmortem examination of their baby, and number who agreed to a postmortem examination; reasons for agreeing and not agreeing to a postmortem examination; quality of explanation received; number who regretted their decision to give or withhold consent for a postmortem examination. RESULTS:166 (64%) respondents completed the questionnaire. Of these, 148 (89%) had been asked to agree to a postmortem examination on their baby and 120/148 of these respondents (81%) agreed, most of whom recognised benefits resulting from the examination. 101/117 (86%) respondents believed the findings had been explained appropriately. Nine (7%) of the 120 respondents who had agreed to a postmortem examination regretted their decision. Of the respondents who refused an examination, four (14%) had regrets about their decision. DISCUSSION:Parents viewed the postmortem examination as a useful and necessary tool in helping to discover the reasons why their baby had died. Simplifying the language used to explain findings may further raise parents' understanding of the value of the postmortem examination and ensure that they are satisfied with it. Medical staff involved in consent for postmortem examinations should be fully trained in how to ask for parental consent, the postmortem examination procedure, and how to explain the findings.

Project description:BACKGROUND:In recent literature, patient portals are considered as important tools for the delivery of patient-centered care. To date, it is not clear how patients would conceptualize a patient portal and which health information needs they have when doing so. OBJECTIVE:This study aimed (1) to investigate health information needs, expectations, and attitudes toward a patient portal and (2) to assess whether determinants, such as patient characteristics, health literacy, and empowerment status, can predict two different variables, namely the importance people attribute to obtaining health information when using a patient portal and the expectations concerning personal health care when using a patient portal. METHODS:We conducted a cross-sectional survey of the Flemish population on what patients prefer to know about their digital health data and their expectations and attitudes toward using a patient portal to access their electronic health record. People were invited to participate in the survey through newsletters, social media, and magazines. We used a questionnaire including demographics, health characteristics, health literacy, patient empowerment, and patient portal characteristics. RESULTS:We received 433 completed surveys. The health information needs included features such as being notified when one's health changes (371/396, 93.7%), being notified when physical parameters increase to dangerous levels (370/395, 93.7%), observing connections between one's symptoms or diseases or biological parameters (339/398, 85.2%), viewing the evolution of one's health in function of time (333/394, 84.5%), and viewing information about the expected effect of treatment (349/395, 88.4%). Almost 90% (369/412) of respondents were interested in using a patient portal. Determinants of patients' attachment for obtaining health information on a patient portal were (1) age between 45 and 54 years (P=.05); (2) neutral (P=.03) or interested attitude (P=.008) toward shared decision making; and (3) commitment to question physicians' decisions (P=.03, R2=0.122). Determinants of patients' expectations on improved health care by accessing a patient portal were (1) lower education level (P=.04); (2) neutral (P=.03) or interested attitude (P=.008) toward shared decision making; and (3) problems in understanding health information (P=.04; R2=0.106). CONCLUSIONS:The interest in using a patient portal is considerable in Flanders. People would like to receive alerts or some form of communication from a patient portal in case they need to act to manage their health. Determinants such as education, attached importance to shared decision making, difficulties in finding relevant health information, and the attached importance in questioning the decisions of physicians need to be considered in the design of a patient portal.

Dataset Information

Canadians' views on the use of routinely collected data in health research: a patient-oriented cross-sectional survey.

Publications

Canadians' views on the use of routinely collected data in health research: a patient-oriented cross-sectional survey.

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