Ethical Use of Administrative Data for Research Purposes

Stiles, Paul G.; Boothroyd, Roger A.

doi:10.1057/9781137475114_5

Cited by 5 publications

(4 citation statements)

References 29 publications

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“…We did not include abstracts presented at scientific meetings because they do not contain sufficient information to properly assess study quality. Finally, we did not address the ethical issues associated with each study because ethical considerations vary by jurisdiction; however, these principles may be guiding the conduct of research using administrative data (). Feasibility, practicality, or ethical considerations may have played a role in the different methodologic approaches that we identified, and future work is required to fully understand and address solutions to these real‐world problems that may impede optimal administrative data validation methodology.…”

Section: Discussionmentioning

confidence: 99%

Systematic Review and Critical Appraisal of Validation Studies to Identify Rheumatic Diseases in Health Administrative Databases

Widdifield

Labrecque

Lix

et al. 2013

Arthritis Care & Research

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Objective. To evaluate the quality of the methods and reporting of published studies that validate administrative database algorithms for rheumatic disease case ascertainment. Methods. We systematically searched MEDLINE, Embase, and the reference lists of articles published from 1980 to 2011. We included studies that validated administrative data algorithms for rheumatic disease case ascertainment using medical record or patient-reported diagnoses as the reference standard. Each study was evaluated using published standards for the reporting and quality assessment of diagnostic accuracy, which informed the development of a methodologic framework to help critically appraise and guide research in this area. Results. Twenty-three studies met the inclusion criteria. Administrative database algorithms to identify cases were most frequently validated against diagnoses in medical records (83%). Almost two-thirds of the studies (61%) used diagnosis codes in administrative data to identify potential cases and then reviewed medical records to confirm the diagnoses. The remaining studies did the reverse, identifying patients using a reference standard and then testing algorithms to identify cases in administrative data. Many authors (61%) described the patient population, but few (26%) reported key measures of diagnostic accuracy (sensitivity, specificity, and positive and negative predictive values). Only one-third of studies reported disease prevalence in the validation study sample. Conclusion. The methods used in administrative data validation studies of rheumatic diseases are highly variable. Few studies reported key measures of diagnostic accuracy despite their importance for drawing conclusions about the validity of administrative database algorithms. We developed a methodologic framework and recommendations for validation study conduct and reporting.

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Section: Discussionmentioning

confidence: 99%

Systematic Review and Critical Appraisal of Validation Studies to Identify Rheumatic Diseases in Health Administrative Databases

Widdifield

Labrecque

Lix

et al. 2013

Arthritis Care & Research

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“…Since only anonymized data was obtained from the institution and the research was in line with the institution's aim to improve the student experience, direct consent was not obtained from students. This approach of not obtaining individual consent is in line with existing ethical protocols relating to the use of administrative data (Regidor, 2004;Stiles and Boothroyd, 2015). Further, direct consent from students was not possible in our case due to the focus of this research, that is, dropout.…”

Section: Participants and Ethicsmentioning

confidence: 81%

Trajectory of University Dropout: Investigating the Cumulative Effect of Academic Vulnerability and Proximity to Family Support

Sosu

Pheunpha

2019

Front. Educ.

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University dropout is a major policy concern around the world because of its consequences for the individual, institutions and society. In this study, we offer new evidence by examining the cumulative effect of academic vulnerability and family support on trajectory of dropout among cohorts of undergraduate students in Thailand. Data were drawn from administrative records of two cohorts of students (n = 1,613), and consisted of information on which semester individual's dropped out of university. Using discrete time survival analysis, we first modeled the trajectory of dropout without predictors followed by a conditional model which examined the effects of predictors on the trajectory of dropout. Cumulative effects of predictors were then examined by plotting the probabilities of their combined effects on dropout in each semester. Our findings show that while the beginning of the second year was a critical period of dropout with almost 20% of students leaving by this time, as much as 10% of students drop out between the second and final year. Students with the lowest entry grades were about 2.17 times more likely to dropout while those who were farther away from family support were 1.32 times more likely to drop out across each semester. The cumulative effect of low entry grades and living away from family support resulted in a 30% probability of dropping out in the second year. The dropout rate among this category of students by the final year was 60% compared to only 14% for students with high entry grades and who live close to their families. Among other things, we recommend that interventions to reduce dropout should encompass both helping students to access family support and develop personal connections at university to compensate for absence of family support, as well as academically focused support for student who do not have a strong entry qualification.

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“…These public fears about the unauthorized use of data records pose a real threat to using personally identifiable information in a government operated IDS to foster evidence-based improvements in public services. Public mistrust is a real challenge to IDS governance, and it calls us to directly respond to this challenge by intentionally prioritizing innovative ways to enhance the ethical uses of IDS (Stiles and Boothroyd 2013). The following section considers the advancements proposed by the expert panel on governance.…”

Section: Ids Governancementioning

confidence: 99%

Maximizing the Use of Integrated Data Systems: Understanding the Challenges and Advancing Solutions

Culhane¹,

Fantuzzo²,

Hill³

et al. 2017

The ANNALS of the American Academy of Political and Social Scie

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State and local governments are seeking to use their health, education, and human services administrative data to address major social problems. As they attempt to move forward to develop and use integrated data systems (IDS), they have encountered substantial challenges. The Actionable Intelligence for Social Policy (AISP) team at the University of Pennsylvania targeted four common sets of challenges to IDS use: IDS governance, legal agreements, technology and data security, and data standards. The purpose of this article is to present the results from a year-long convening of four panels of national experts in each of these key topic areas. The results specify the greatest IDS challenges in each of these areas, and develop state-of-the-art responses to innovate the IDS field. It discusses how these solutions promote more effective, efficient, and routine use of IDS that are scalable to advance the IDS field beyond these current limitations in practice.

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Ethical Use of Administrative Data for Research Purposes

Cited by 5 publications

References 29 publications

Systematic Review and Critical Appraisal of Validation Studies to Identify Rheumatic Diseases in Health Administrative Databases

Systematic Review and Critical Appraisal of Validation Studies to Identify Rheumatic Diseases in Health Administrative Databases

Trajectory of University Dropout: Investigating the Cumulative Effect of Academic Vulnerability and Proximity to Family Support

Maximizing the Use of Integrated Data Systems: Understanding the Challenges and Advancing Solutions

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