Creating small-area deprivation indices: a guide for stages and options

Small-area composite measures (such as for deprivation, geographic access or green space) have become increasing popular among both researchers and policy makers and are frequently used to compare or rank areas. Because of their seeming simplicity and wide appeal, it is important to set out for researchers and users the different stages and options that underlie the development of composite indices. Using small area deprivation measures as an example, this article reviews the key decisions faced by researchers from choosing the data and variables to validation and measuring uncertainty. Our aim is to guide researchers in the planning and following through with the process of developing a small-area measure. To date, the different choices are often not considered and the methodological decisions tend to be based on tradition or convenience. While there is no widely accepted framework for choosing between methods, we argue that researchers should compare different methods and justify their decisions at each stage of the process. In particular, more emphasis should be put on validating measures for different population subgroups

Developing a Small-Area Deprivation Measure for Brazil

This report describes the development of the BrazDep small-area deprivation measure for the whole of Brazil. The measure uses the 2010 Brazilian Population Census data and is calculated for the smallest possible geographical area level, the census sectors. It combines three variables – (1) percent of households with per capita income ≤ 1/2 minimum wage; (2) percent of people not literate, aged 7+; and (3) average of percent of people with inadequate access to sewage, water, garbage collection and no toilet and bath/shower – into a single measure. Similar measures have previously been developed at the census sector level for some states or municipalities, but the deprivation measure described in this report is the first one to be provided for census sectors for the whole of Brazil. BrazDep is a measure of relative deprivation, placing the census sectors on a scale of material well-being from the least to the most deprived. It is useful in comparing areas within Brazil in 2010, but cannot be used to make comparisons across countries or time. Categorical versions of the measure are also provided, placing census sectors into groups of similar levels of deprivation. Deprivation measures, such as the one developed here, have been developed for many countries and are popular tools in public health research for describing the social patterning of health outcomes and supporting the targeting and delivery of services to areas of higher need. The deprivation measure is exponentially distributed, with a large proportion of areas having a low deprivation score and a smaller number of areas experiencing very high deprivation. There is significant regional variation in deprivation; areas in the North and Northeast of Brazil have on average much higher deprivation compared to the South and Southeast. Deprivation levels in the Central-West region fall between those for the North and South. Differences are also great between urban and rural areas, with the former having lower levels of deprivation compared to the latter. The measure was validated by comparing it to other similar indices measuring health and social vulnerability at the census sector level in states and municipalities where it was possible, and at the municipal level for across the whole of Brazil. At the municipal level the deprivation measure was also compared to health outcomes. The different validation exercises showed that the developed measure produced expected results and could be considered validated. As the measure is an estimate of the “true” deprivation in Brazil, uncertainty exists about the exact level of deprivation for all of the areas. For the majority of census sectors the uncertainty is small enough that we can reliably place the area into a deprivation category. However, for some areas uncertainty is very high and the provided estimate is unreliable. These considerations should always be kept in mind when using the BrazDep measure in research or policy. The measure should be used as part of a toolkit, rather than a single basis for decision-making. The data together with documentation is available from the University of Glasgow http: //dx.doi.org/10.5525/gla.researchdata.980. The data and this report are distributed under Creative Commons Share-Alike license (CC BY-SA 4.0) and can be freely used by researchers, policy makers or members of public

Personal data usage and privacy considerations in the COVID-19 global pandemic

Data has become increasingly important and valuable for both scientists and health authorities searching for answers to the COVID-19 crisis. Due to difficulties in diagnosing this infection in populations around the world, initiatives supported by digital technologies are being developed by governments and private companies to enable the tracking of the public’s symptoms, contacts and movements. Considering the current scenario, initiatives designed to support infection surveillance and monitoring are essential and necessary. Nonetheless, ethical, legal and technical questions abound regarding the amount and types of personal data being collected, processed, shared and used in the name of public health, as well as the concomitant or posterior use of this data. These challenges demonstrate the need for new models of responsible and transparent data and technology governance in efforts to control SARS-COV2, as well as in future public health emergencies

Examining the quality of record linkage process using nationwide Brazilian administrative databases to build a large birth cohort.

BACKGROUND: Research using linked routine population-based data collected for non-research purposes has increased in recent years because they are a rich and detailed source of information. The objective of this study is to present an approach to prepare and link data from administrative sources in a middle-income country, to estimate its quality and to identify potential sources of bias by comparing linked and non-linked individuals. METHODS: We linked two administrative datasets with data covering the period 2001 to 2015, using maternal attributes (name, age, date of birth, and municipally of residence) from Brazil: live birth information system and the 100 Million Brazilian Cohort (created using administrative records from over 114 million individuals whose families applied for social assistance via the Unified Register for Social Programmes) implementing an in house developed linkage tool CIDACS-RL. We then estimated the proportion of highly probably link and examined the characteristics of missed-matches to identify any potential source of bias. RESULTS: A total of 27,699,891 live births were submited to linkage with maternal information recorded in the baseline of the 100 Million Brazilian Cohort dataset of those, 16,447,414 (59.4%) children were found registered in the 100 Million Brazilian Cohort dataset. The proportion of highly probably link ranged from 39.3% in 2001 to 82.1% in 2014. A substantial improvement in the linkage after the introduction of maternal date of birth attribute, in 2011, was observed. Our analyses indicated a slightly higher proportion of missing data among missed matches and a higher proportion of people living in an urban area and self-declared as Caucasian among linked pairs when compared with non-linked sets. DISCUSSION: We demonstrated that CIDACS-RL is capable of performing high quality linkage even with a limited number of common attributes, using indexation as a blocking strategy in larg e routine databases from a middle-income country. However, residual records occurred more among people under worse living conditions. The results presented in this study reinforce the need of evaluating linkage quality and when necessary to take linkage error into account for the analyses of any generated dataset

Effect of a conditional cash transfer programme on leprosy treatment adherence and cure in patients from the nationwide 100 Million Brazilian Cohort: a quasi-experimental study.

BACKGROUND: Indirect financial costs and barriers to health-care access might contribute to leprosy treatment non-adherence. We estimated the association of the Brazilian conditional cash transfer programme, the Programa Bolsa Família (PBF), on leprosy treatment adherence and cure in patients in Brazil. METHODS: In this quasi-experimental study, we linked baseline demographic and socioeconomic information for individuals who entered the 100 Million Brazilian Cohort between Jan 1, 2007, and Dec 31, 2014, with the PBF payroll database and the Information System for Notifiable Diseases, which includes nationwide leprosy registries. Individuals were eligible for inclusion if they had a household member older than 15 years and had not received PBF aid or been diagnosed with leprosy before entering the 100 Million Brazilian Cohort; they were excluded if they were partial receivers of PBF benefits, had missing data, or had a monthly per-capita income greater than BRL200 (US$50). Individuals who were PBF beneficiaries before leprosy diagnosis were matched to those who were not beneficiaries through propensity-score matching (1:1) with replacement on the basis of baseline covariates, including sex, age, race or ethnicity, education, work, income, place of residence, and household characteristics. We used logistic regression to assess the average treatment effect on the treated of receipt of PBF benefits on leprosy treatment adherence (six or more multidrug therapy doses for paucibacillary cases or 12 or more doses for multibacillary cases) and cure in individuals of all ages. We stratified our analysis according to operational disease classification (paucibacillary or multibacillary). We also did a subgroup analysis of paediatric leprosy restricted to children aged up to 15 years. FINDINGS: We included 11?456 new leprosy cases, of whom 8750 (76·3%) had received PBF before diagnosis and 2706 (23·6%) had not. Overall, 9508 (83·0%) patients adhered to treatment and 10?077 (88·0%) were cured. After propensity score matching, receiving PBF before diagnosis was associated with adherence to treatment (OR 1·22, 95% CI 1·01-1·48) and cure (1·26, 1·01-1·58). PBF receipt did not significantly improve treatment adherence (1·37, 0·98-1·91) or cure (1·12, 0·75-1·67) in patients with paucibacillary leprosy. For patients with multibacillary disease, PBF beneficiaries had better treatment adherence (1·37, 1·08-1·74) and cure (1·43, 1·09-1·90) than non-beneficiaries. In the propensity score-matched analysis in 2654 children younger than 15 years with leprosy, PBF exposure was not associated with leprosy treatment adherence (1·55, 0·89-2·68) or cure (1·57, 0·83-2·97). INTERPRETATION: Our results suggest that being a beneficiary of the PBF, which facilitates cash transfers and improved access to health care, is associated with greater leprosy multidrug therapy adherence and cure in multibacillary cases. These results are especially relevant for patients with multibacillary disease, who are treated for a longer period and have lower cure rates than those with paucibacillary disease. FUNDING: CONFAP/ESRC/MRC/BBSRC/CNPq/FAPDF-Doenças Negligenciadas, the UK Medical Research Council, the Wellcome Trust, and Coordenação de Aperfeiçoamento de Pessoal de Nível Superior-Brazil (CAPES)

Sensibilidade e especificidade da leitura da cicatriz vacinal do BCG

OBJECTIVE: To validate the BCG scar as a marker of BCG vaccination status. METHODS: A cross-sectional survey was carried out among 53,348 schoolchildren aged 6-14 years who underwent BCG scar examination as part of a large BCG vaccine trial taking place in the city of Manaus, Brazil. Results of BCG scar reading were compared with information on vaccine status of their vaccination cards or provided by parents or guardians. Double-reading was performed in a sub-sample. Data analysis was conducted using Stata 7 and Kappa coefficient. RESULTS: Of 52,348 schoolchildren studied, vaccine status information from parents/guardian letters was available for 29,254 and from vaccination cards for 4,947. There was found a high agreement between the double-readings of the scars (Kappa=0.81). When the agreement between letter and card information was the gold standard, the sensitivity of BCG scar readings was 96.6% (95%CI 96.0-97.1) and the specificity was 71.1% (95%CI 55.7-83.7). The sensitivity was 96.1%, 97.3% and 95.3% for children vaccinated up to one month of age, four months and one year, respectively. CONCLUSIONS: Sensitivity and specificity did not show an association with the child's age at the scar reading. BCG scar was a good marker of BCG vaccination status regardless of age - from the first years of life up to 14 years old.OBJETIVO: Validar a utilização da cicatriz vacinal de BCG como um indicador de vacinação. MÉTODOS: Foi realizado um estudo transversal em 52.348 escolares, entre 6 e 14 anos de idade, que possuíam exame de cicatriz vacinal do BCG e que participaram de um ensaio clínico randomizado e controlado na cidade de Manaus, Brasil. Os dados da leitura da cicatriz vacinal foram comparados com a informação sobre a vacinação passada fornecida pelos cartões vacinais ou informação dos responsáveis. Em uma subamostra foi realizada leitura dupla com cálculo do coeficiente Kappa. Para análise dos dados utilizou-se o Stata 7. RESULTADOS: Do total de 52.348 escolares estudados, 29.254 possuíam informação sobre cicatriz vacinal coletada por meio de carta aos pais, e 4.947 possuíam história de vacinação coletada pelo cartão de vacinas. Observou-se elevada concordância entre a dupla leitura de cicatriz vacinal (Kappa =0,81). A sensibilidade da leitura de cicatriz vacinal foi 96,6% (95% IC 96,0-97,1) e a especificidade foi 71,1% (95% IC 55,7-83,7) quando o padrão ouro utilizado foi a concordância entre a carta aos pais e a informação do cartão de vacinas. A sensibilidade foi de 96,1%, 97,3% e 95,3% para crianças vacinadas até um mês de idade, até 4 meses e até um ano de idade, respectivamente. CONCLUSÕES: Os valores encontrados para sensibilidade e especificidade foram independentes da idade da realização da leitura de cicatriz vacinal. O exame da cicatriz vacinal mostrou ser um bom indicador para avaliar a situação vacinal referente ao BCG

Preservação da privacidade no enfrentamento da COVID-19: dados pessoais e a pandemia global

Data is becoming ever more critical and valuable for both scientists and health authorities searching for answers to the COVID-19 crisis. Due to difficulties in diagnosing this infection in populations around the world, initiatives supported by digital technologies have been developed by governments or private companies which enable the tracking of the public’s symptoms, contacts and movements. Considering the current scenario, these initiatives, designed to support the surveillance and monitoring of contagion, are essential and necessary.  Nonetheless, ethical, legal and technical questions remain unanswered regarding the amount and types of personal data being collected, processed, shared and used in the name of public health, as well as the concomitant or later use of this data. These challenges demonstrate the need for new models of responsible and transparent data and technology governance in efforts to control Sars-Cov2 as well as future public health emergencies.Dados ganham cada vez mais importância e valor na busca de respostas para enfrentar a COVID-19 tanto para ciência quanto para as autoridades sanitárias. Em virtude da dificuldade de realizar diagnóstico da infecção na população em geral, iniciativas apoiadas em tecnologias digitais vem sendo desenvolvidas por governos ou empresas privadas para possibilitar rastreamentos de sintomas, contatos e deslocamentos para apoiar estratégias de acompanhamento e avaliação na vigilância de contágios. A despeito da importância e necessidade dessas iniciativas, questionamentos acerca da quantidade e tipos de dados pessoais coletados, processados, compartilhados e utilizados em nome da saúde pública, bem como os concomitantes ou posteriores usos desses dados, suscitam questionamentos éticos, legais e técnicos. Desafios que apontam para a necessidade de novos modelos de governança de dados e de tecnologias, responsáveis e transparentes, para controlar o Sars-Cov2 e as futuras emergências de saúde pública

Public Involvement & Engagement in health inequalities research on COVID-19 pandemic: a case study of CIDACS/FIOCRUZ BAHIA

Introduction Health inequalities in Brazil have deepened on Covid-19 pandemic, and the most vulnerable people were the more affected. A multidisciplinary team from Cidacs/Fiocruz Bahia developed a Social Disparities Index for Covid-19 (IDS-COVID-19) to support the evaluation of effects of health inequalities on the pandemic in Brazil. Public Involvement and Engagement were the pillars of this research because they allowed us to access first hand experiences about the social context in our country. Objectives This paper aims to describe our Public Involvement and Engagement experience by analysing our challenges, strategies, activities, results, and lessons learned during the construction of IDS-COVID-19. Methods The basis of the IDS-Covid-19 public engagement model was the participation of different social groups through methods and techniques that allow dialogue. Several activities and communication products supported the continuous interactions. Another guideline was the inclusion and the welcoming of participants from the beginning of the project to ensure that the participant's contributions could drive decision-making about the research. Results Participants made several contributions to the research as a new layer of information to the Index, and improvements were made to the interactive panel. They also compromised to support the dissemination and use of the product. Eight representatives of community groups and 29 policymakers participated in our engagement activities during the project. More than 500 people were in our open webinars. In addition, more than 140 news items about IDS-Covid-19 were published in national and international media. Conclusions We highlight as lessons learned the adaptation of some dissemination formats to the public, and the necessity of being flexible and accessible to participants. We strengthened the relationship with relevant stakeholders by exploring individual conversations by phone, WhatsApp, email, and interviews to produce a documentary that registered this whole experience. Cidacs/Fiocruz Bahia has also embedded public engagement and involvement in the study agenda

The need for fast-track, high-quality and low-cost studies about the role of the BCG vaccine in the fight against COVID-19.

Bacillus Calmette-Guérin (BCG) vaccination is routine and near-universal in many low- and middle-income countries (LMIC). It has been suggested that BCG can have a protective effect on COVID-19 morbidity and mortality. This commentary discusses the limitations of the evidence around BCG and COVID-19. We argue that higher-quality evidence is necessary to understand the protective effect of the BCG vaccine from existing, secondary data, while we await results from clinical trials currently conducted in different settings

A completeness indicator of gestational and congenital syphilis information in Brazil

OBJECTIVE: To evaluate the quality of information on gestational syphilis (GS) and congenital syphilis (CS) on the Sistema de Informação de Agravos de Notificação (SINAN-Syphilis Brazil – Notifiable Diseases Information System) by compiling and validating completeness indicators between 2007 and 2018. METHODS: Overall, care, and socioeconomic completeness scores were compiled based on selected variables, by using ad hoc weights assigned by experts. The completeness scores were analysed, considering the region and area of residence, the pregnant woman’s race/colour, and the year of case notification. Pearson’s correlation coefficients were used to validate the scores obtained by the weighted average method, compared with the values obtained by principal component analysis (PCA). RESULTS: Most selected variables presented a good or excellent degree of completeness for GS and CS, except for clinical classification, pregnant woman’s level of education, partner’s treatment, and child’s race/colour, which were classified as poor or very poor. The overall (89.93% versus 89.69%) and socioeconomic (88.71% versus 88.24%) completeness scores for GS and CS, respectively, were classified as regular, whereas the care score (GS-90.88%, and CS-90.72%) was good, despite improvements over time. Differences in the overall, care and socioeconomic completeness scores according to region, area of residence, and ethnic-racial groups were reported for syphilis notifications. The completeness scores estimated by the weighted average method and PCA showed a strong linear correlation (> 0.90). CONCLUSION: The completeness of GS and CS notifications has been improving in recent years, highlighting the variables that form the care score, compared with the socioeconomic scores, despite differences between regions, area of residence, and ethnic-racial groups. The weighted average was a viable methodological alternative easily operationalised to estimate data completeness scores, allowing routine monitoring of the completeness of gestational and congenital syphilis records