scholarly journals Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review

Author(s):  
Kalinda E. Griffiths ◽  
Jessica Blain ◽  
Claire M. Vajdic ◽  
Louisa Jorm

There is increasing potential to improve the research and reporting on the health and wellbeing of Indigenous and Tribal peoples through the collection and (re)use of population-level data. As the data economy grows and the value of data increases, the optimization of data pertaining to Indigenous peoples requires governance that defines who makes decisions on behalf of whom and how these data can and should be used. An international a priori PROSPERO (#CRD42020170033) systematic review was undertaken to examine the health research literature to (1) identify, describe, and synthesize definitions and principles; (2) identify and describe data governance frameworks; and (3) identify, describe, and synthesize processes, policies and practices used in Indigenous Data Governance (ID-GOV). Sixty-eight articles were included in the review that found five components that require consideration in the governance of health research data pertaining to Indigenous people. This included (1) Indigenous governance; (2) institutional ethics; (3) socio-political dynamics; (4) data management and data stewardship; and (5) overarching influences. This review provides the first systematic international review of ID-GOV that could potentially be used in a range of governance strategies moving forward in health research.

2021 ◽  
Vol 50 (Supplement_1) ◽  
Author(s):  
Kalinda Griffiths ◽  
Tessa Wallace ◽  
Claire Vajdic ◽  
Louisa Jorm

Abstract Background Despite a broad range of research using Indigenous specific data, there is limited research to describe what constitutes data governance. To identify priorities and monitor progress in health, data is critical. Accurate collection and appropriate analysis of population level data is necessary in understanding population distributions of health and wellbeing. The aim of this review is to provide a comprehensive understanding of the current literature describing Indigenous Data Governance (IDG) processes in health research. Methods A comprehensive a-priori search strategy has been developed and submitted for registration through PROSPERO(APP170033). Literature will be sourced from bibliographic databases, review articles, key journals, conference proceedings, grey literature and referrals by key experts up until 01/2020 and synthesised (through meta-study and meta-aggregation approaches) in accordance with PRISMA guidelines. Results Once completed, a descriptive overview along with discussion on IDG processes in decision making specific to health research will be synthesized. IDG 'interventions' may include, but are not limited to, community advisory committees, Indigenous leadership, or institutional and/or project policies pertaining to decision making processes in the use of data in health research. Conclusions This review will provide evidence of definitions and procedures specific to IDG in the literature and how IDG, as a process, is operationalised in Indigenous health research across the globe. Key messages Preliminary Key messages include the lack of IDG processes described in the literature and the need for the development of guidelines to support researchers in operationalising Indigenous Data Sovereignty.


Author(s):  
Sue Schultz ◽  
Carmen Jones ◽  
Jennifer Walker

IntroductionIn Ontario, First Nations are increasingly seeking population-level data about the health of their citizens. However, First Nations people are not readily identified in standard health administrative data and indirect strategies, such as the use of on-reserve addresses, are limited in scope and validity. Objectives and ApproachThe Chiefs of Ontario entered into a Data Governance Agreement with the Institute for Clinical Evaluative Sciences (ICES) that enabled the linkage of the federal Indian Register (IR) to data at ICES. This study examined the impact of the IR linkage on First Nations population estimates and location of residence, measured by postal code or residence code. Overall, and for each First Nation community in Ontario, we compared First Nations population estimates from the ICES data with and without the IR linkage to estimates available from Indigenous and Northern Affairs Canada (INAC). ResultsWithout the IR, using only Ontario residence codes or postal codes that were unique to a given community, 62,242 individuals were identified as living in First Nations communities. This is approximately 30% lower than the current INAC on-reserve population estimate of 92,234 for First Nations communities in Ontario. Adding the IR allowed the use of non-unique postal codes as well, resulting in the identification of an additional 15,183 First Nations individuals. It also allowed the identification of over 113,000 First Nations individuals who live outside of First Nations communities, especially in urban areas. Finally, the combination of residence information and the IR permits communities to identify their registered member living within and outside their communities. Conclusion/ImplicationsUsing the IR in combination with geographic residence information, made possible through the Data Governance Agreement signed between Chiefs of Ontario and ICES, will provide First Nations communities with more accurate and complete population estimates, which is key to the production of useful and relevant First Nations-specific health research.


2020 ◽  
Author(s):  
Lauren L Beal ◽  
Jacob M Kolman ◽  
Stephen L Jones ◽  
Aroub Khleif ◽  
Terri Menser

BACKGROUND Use of patient portals has been associated with positive outcomes in patient engagement and satisfaction; portal studies have also connected portal use as well as the nature of users’ interactions with portals and the contents of their generated data to meaningful cost and quality outcomes. Incentive programs in the USA have encouraged uptake of health information technology, including portals, by setting standards for meaningful use of such technology. However, despite widespread interest in patient portal use and adoption, studies on patient portals differ in actual metrics used to operationalize and track utilization, leading to unsystematic and incommensurable characterizations of use. OBJECTIVE No review has systematically assessed the measurements used to investigate patient portal utilization. Therefore, the objective of this study is to apply systematic review criteria to identify and compare methods for quantifying and reporting patient portal use. METHODS Original studies with quantifiable metrics of portal use, available in English between 2014 and the search date of October 17, 2018, were obtained from PubMed, using the Medical Subject Heading term “patient portals” and related keyword searches. The first search round included full text review of all results to confirm a priori data charting elements of interest and suggest additional categories inductively; this round was supplemented by retrieval of works cited in systematic reviews (based on title screening). An additional search round included broader keywords. Studies were screened at abstract-level for inclusion, confirmed by at least two raters. Included studies were analyzed for metrics related to basic use / adoption; frequency of use; duration metrics; intensity; and stratification of users into “super user” or high-utilization types. Additional categories related to provider (including care team / administrative) use of the portal were identified inductively. Analysis of whether metrics aligned with Meaningful Use Stage 2 categories (MU-2) employed by the US Centers for Medicare and Medicaid Services was also conducted. RESULTS Of 315 distinct search results, 87 met inclusion criteria. Of the a priori metrics, plus provider use, most studies included either three types (27 studies, 31.03%) or four types (22, 25.29%) of metrics. Nine studies (10.34%) only reported the patient use / adoption metric, and only one study (1.15%) reported all six. Of the U.S.-based studies (76), 18 were explicitly motivated by MU-2 compliance; 40 (52.63%) at least mentioned these incentives, but only 6 (7.89%) presented metrics from which compliance rates could be inferred. CONCLUSIONS Portal utilization measures in the research literature can fall below established standards for “meaningful” or they can substantively exceed those standards in the type and number of utilization properties measured. Understanding how patient portal use has been defined and operationalized may encourage more consistent, well-defined, and perhaps more meaningful standards for utilization, informing future portal development.


2020 ◽  
Author(s):  
Nathan A. Brooks ◽  
Ankur Puri ◽  
Sanya Garg ◽  
Swapnika Nag ◽  
Jacomo Corbo ◽  
...  

Abstract Population-level data have suggested that bacille Calmette-Guerin (BCG) vaccination may lessen the severity of COVID-19; prior reports have demonstrated conflicting results. We leveraged publicly available databases and unsupervised machine learning, adjusting for established confounders designated a priori, to assign countries into similar clusters. The primary outcome was the association of deaths per million related to COVID-19 (CSM) 30 days after each included country reported 100 cases with several factors including vaccination. Validation was performed using linear regression and country-specific modeling. This protocol details the statistical analyses used to establish an association between BCG vaccination and CSM, which includes : Definition of the target function, data processing, exploratory factor analysis for variable selection, k-means clustering and step wise linear regression for validation. This protocol is differentiated from previous works on the same subject by its' comprehensive nature which considers the effect of several confounding variables while studying the association between BCG vaccination and CSM. There are still several potential measured and unmeasured confounding variables which could not be included in this study. It is also unclear if the protection from neonatal vaccination with BCG is transferable to those receiving vaccination as an adult and how long such protection lasts. The authors advise caution against routine BCG vaccination for the prevention of COVID-19 until prospective trials are completed.


Author(s):  
Kerina Jones ◽  
Helen Daniels ◽  
Sharon Heys ◽  
David Ford

IntroductionCall Detail Records (CDRs) are collected by mobile network operators in the course of service provision, and they are increasingly being used in health research. It has been identified that further work is needed to show that CDRs can be used within an ethically-founded framework that meets with social acceptability. Objectives and ApproachThe published research literature was reviewed to identify data governance arrangements, challenges and potential opportunities for the greater use of the location element of CDRs in health research. A series of 3 workshops with members of the public (N=61) were conducted to gain views on the use of CDRs for health research. Data use scenarios of CDRs for health research were constructed to consider risk and mitigating controls. The findings were drawn together against a backdrop of legislative and regulatory requirements. ResultsThe majority of published studies focused on low and middle income countries, often modelling the transmission of infectious diseases, and population movement following natural disasters. CDRs were used in anonymised or aggregated form, and gaining regulatory approvals varied with data provider and by jurisdiction. Only 2 people knew CDR data was being used for health research, but ultimately, most (N=49) were happy for their anonymised CDRs to be used, provided that safeguards were in place. Recommendations towards an ethically-founded framework for using CDR locations in health research are proposed, including the need for greater transparency, accountability, and the incorporation of public views for social acceptability. Conclusion/ImplicationsDespite limitations inherent in the data, mobile phone CDRs have been used successfully in health research. People are generally amenable to the use of anonymised CDR data, but they want to be properly informed. The proposed recommendations should be taken into consideration to contribute towards a consistent, socially-acceptable, ethically founded framework.


2019 ◽  
Vol 4 (5) ◽  
pp. 878-892
Author(s):  
Joseph A. Napoli ◽  
Linda D. Vallino

Purpose The 2 most commonly used operations to treat velopharyngeal inadequacy (VPI) are superiorly based pharyngeal flap and sphincter pharyngoplasty, both of which may result in hyponasal speech and airway obstruction. The purpose of this article is to (a) describe the bilateral buccal flap revision palatoplasty (BBFRP) as an alternative technique to manage VPI while minimizing these risks and (b) conduct a systematic review of the evidence of BBFRP on speech and other clinical outcomes. A report comparing the speech of a child with hypernasality before and after BBFRP is presented. Method A review of databases was conducted for studies of buccal flaps to treat VPI. Using the principles of a systematic review, the articles were read, and data were abstracted for study characteristics that were developed a priori. With respect to the case report, speech and instrumental data from a child with repaired cleft lip and palate and hypernasal speech were collected and analyzed before and after surgery. Results Eight articles were included in the analysis. The results were positive, and the evidence is in favor of BBFRP in improving velopharyngeal function, while minimizing the risk of hyponasal speech and obstructive sleep apnea. Before surgery, the child's speech was characterized by moderate hypernasality, and after surgery, it was judged to be within normal limits. Conclusion Based on clinical experience and results from the systematic review, there is sufficient evidence that the buccal flap is effective in improving resonance and minimizing obstructive sleep apnea. We recommend BBFRP as another approach in selected patients to manage VPI. Supplemental Material https://doi.org/10.23641/asha.9919352


Author(s):  
Jie Yang ◽  
Rohan D’souza ◽  
Ashraf Kharrat ◽  
Deshayne B. Fell ◽  
John W. Snelgrove ◽  
...  

2021 ◽  
Vol 10 (11) ◽  
pp. 2314
Author(s):  
Mikolaj Przydacz ◽  
Marcin Chlosta ◽  
Piotr Chlosta

Objectives: Population-level data are lacking for urinary incontinence (UI) in Central and Eastern European countries. Therefore, the objective of this study was to estimate the prevalence, bother, and behavior regarding treatment for UI in a population-representative group of Polish adults aged ≥ 40 years. Methods: Data for this epidemiological study were derived from the larger LUTS POLAND project, in which a group of adults that typified the Polish population were surveyed, by telephone, about lower urinary tract symptoms. Respondents were classified by age, sex, and place of residence. UI was assessed with a standard protocol and established International Continence Society definitions. Results: The LUTS POLAND survey included 6005 completed interviews. The prevalence of UI was 14.6–25.4%; women reported a greater occurrence compared with men (p < 0.001). For both sexes, UI prevalence increased with age. Stress UI was the most common type of UI in women, and urgency UI was the most prevalent in men. We did not find a difference in prevalence between urban and rural areas. Individuals were greatly bothered by UI. For women, mixed UI was the most bothersome, whereas for men, leak for no reason was most annoying. More than half of respondents (51.4–62.3%) who reported UI expressed anxiety about the effect of UI on their quality of life. Nevertheless, only around one third (29.2–38.1%) of respondents with UI sought treatment, most of whom received treatment. Persons from urban and rural areas did not differ in the degrees of treatment seeking and treatment receiving. Conclusion: Urinary incontinence was prevalent and greatly bothersome among Polish adults aged ≥ 40 years. Consequently, UI had detrimental effects on quality of life. Nonetheless, most affected persons did not seek treatment. Therefore, we need to increase population awareness in Poland about UI and available treatment methods, and we need to ensure adequate allocation of government and healthcare system resources.


2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Nassr Nama ◽  
Mirna Hennawy ◽  
Nick Barrowman ◽  
Katie O’Hearn ◽  
Margaret Sampson ◽  
...  

Abstract Background Accepted systematic review (SR) methodology requires citation screening by two reviewers to maximise retrieval of eligible studies. We hypothesized that records could be excluded by a single reviewer without loss of sensitivity in two conditions; the record was ineligible for multiple reasons, or the record was ineligible for one or more specific reasons that could be reliably assessed. Methods Twenty-four SRs performed at CHEO, a pediatric health care and research centre in Ottawa, Canada, were divided into derivation and validation sets. Exclusion criteria during abstract screening were sorted into 11 specific categories, with loss in sensitivity determined by individual category and by number of exclusion criteria endorsed. Five single reviewer algorithms that combined individual categories and multiple exclusion criteria were then tested on the derivation and validation sets, with success defined a priori as less than 5% loss of sensitivity. Results The 24 SRs included 930 eligible and 27390 ineligible citations. The reviews were mostly focused on pediatrics (70.8%, N=17/24), but covered various specialties. Using a single reviewer to exclude any citation led to an average loss of sensitivity of 8.6% (95%CI, 6.0–12.1%). Excluding citations with ≥2 exclusion criteria led to 1.2% average loss of sensitivity (95%CI, 0.5–3.1%). Five specific exclusion criteria performed with perfect sensitivity: conference abstract, ineligible age group, case report/series, not human research, and review article. In the derivation set, the five algorithms achieved a loss of sensitivity ranging from 0.0 to 1.9% and work-saved ranging from 14.8 to 39.1%. In the validation set, the loss of sensitivity for all 5 algorithms remained below 2.6%, with work-saved between 10.5% and 48.2%. Conclusions Findings suggest that targeted application of single-reviewer screening, considering both type and number of exclusion criteria, could retain sensitivity and significantly decrease workload. Further research is required to investigate the potential for combining this approach with crowdsourcing or machine learning methodologies.


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