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Routinely collected patient data in neurology research: a systematic mapping review.

ABSTRACT: BACKGROUND:This review focuses on neurology research which uses routinely collected data. The number of such studies is growing alongside the expansion of data collection. We aim to gain a broad picture of the scope of how routine healthcare data have been utilised. METHODS:This study follows a systematic mapping review approach which does not make a judgement on the quality of the papers included in the review, thereby enabling a complete overview of the field. RESULTS:Of 4481 publications retrieved, 386 met the eligibility criteria for this study. These publications covered a wide range of conditions, but the majority were based on one or only a small number of neurological conditions. In particular, publications concerned with three discrete areas of neurological practice - multiple sclerosis (MS), epilepsy/seizure and Parkinson's disease - accounted for 60% of the total. MS was the focus of the highest proportion of eligible studies (35%), yet in the recent Global Burden of Neurological Disease study it ranks only 14th out of 15 neurological disorders for DALY rates. In contrast, migraine is the neurological disorder with the highest ranking of DALYs globally (after stroke) and yet it was represented by only 4% of eligible studies. CONCLUSION:This review shows that there is a disproportionately large body of literature pertaining to relatively rare disorders, and a correspondingly small body of literature describing more common conditions. Therefore, there is potential for future research to redress this balance.

SUBMITTER: Biggin F

PROVIDER: S-EPMC7694309 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Routinely collected patient data in neurology research: a systematic mapping review.

Biggin Fran F Emsley Hedley C A HCA Knight Jo J

BMC neurology 20201127 1

<h4>Background</h4>This review focuses on neurology research which uses routinely collected data. The number of such studies is growing alongside the expansion of data collection. We aim to gain a broad picture of the scope of how routine healthcare data have been utilised.<h4>Methods</h4>This study follows a systematic mapping review approach which does not make a judgement on the quality of the papers included in the review, thereby enabling a complete overview of the field.<h4>Results</h4>Of ...[more]

PMID: 33243167

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Project description:Introduction: Achieving equity in health care remains a challenge for health care systems worldwide and marked inequities in access and quality of care persist. Identifying health care equity indicators is an important first step in integrating the concept of equity into assessments of health care system performance, particularly in emergency care. Methods: We conducted a systematic review of administrative data-derived health care equity indicators and their association with socioeconomic determinants of health (SEDH) in emergency care settings. Following PRISMA-Equity reporting guidelines, Ovid MEDLINE, EMBASE, PubMed, and Web of Science were searched for relevant studies. The outcomes of interest were indicators of health care equity and the associated SEDH they examine. Results: Among 29 studies identified, 14 equity indicators were identified and grouped into four categories that reflect the patient emergency care pathway. Total emergency department (ED) visits and ambulatory care-sensitive condition-related ED visits were the two most frequently used equity indicators. The studies analyzed equity based on seven SEDH: social deprivation, income, education level, social class, insurance coverage, health literacy, and financial and nonfinancial barriers. Despite some conflicting results, all identified SEDH are associated with inequalities in access to and use of emergency care. Conclusion: The use of administrative data-derived indicators in combination with identified SEDH could improve the measurement of health care equity in emergency care settings across health care systems worldwide. Using a combination of indicators is likely to lead to a more comprehensive, well-rounded measurement of health care equity than using any one indicator in isolation. Although studies analyzed focused on emergency care settings, it seems possible to extrapolate these indicators to measure equity in other areas of the health care system. Further studies elucidating root causes of health inequities in and outside the health care system are needed.

Project description:BackgroundLittle 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.MethodsResearchers 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.ResultsOf 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.InterpretationRespondents 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.

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Routinely collected patient data in neurology research: a systematic mapping review.

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Routinely collected patient data in neurology research: a systematic mapping review.

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