Data In Public Health Research Research Articles

Sharing Data for Public Health Research by Members of an International Online Diabetes Social Network

BackgroundSurveillance and response to diabetes may be accelerated through engaging online diabetes social networks (SNs) in consented research. We tested the willingness of an online diabetes community to share data for public health research by providing members with a privacy-preserving social networking software application for rapid temporal-geographic surveillance of glycemic control.Methods and FindingsSN-mediated collection of cross-sectional, member-reported data from an international online diabetes SN entered into a software applicaction we made available in a “Facebook-like” environment to enable reporting, charting and optional sharing of recent hemoglobin A1c values through a geographic display. Self-enrollment by 17% (n = 1,136) of n = 6,500 active members representing 32 countries and 50 US states. Data were current with 83.1% of most recent A1c values reported obtained within the past 90 days. Sharing was high with 81.4% of users permitting data donation to the community display. 34.1% of users also displayed their A1cs on their SN profile page. Users selecting the most permissive sharing options had a lower average A1c (6.8%) than users not sharing with the community (7.1%, p = .038). 95% of users permitted re-contact. Unadjusted aggregate A1c reported by US users closely resembled aggregate 2007–2008 NHANES estimates (respectively, 6.9% and 6.9%, p = 0.85).ConclusionsSuccess within an early adopter community demonstrates that online SNs may comprise efficient platforms for bidirectional communication with and data acquisition from disease populations. Advancing this model for cohort and translational science and for use as a complementary surveillance approach will require understanding of inherent selection and publication (sharing) biases in the data and a technology model that supports autonomy, anonymity and privacy.

Is There a Duty to Share? Ethics of Sharing Research Data in the Context of Public Health Emergencies

Making research data readily accessible during a public health emergency can have profound effects on our response capabilities. The moral milieu of this data sharing has not yet been adequately explored. This article explores the foundation and nature of a duty, if any, that researchers have to share data, specifically in the context of public health emergencies. There are three notable reasons that stand in opposition to a duty to share one’s data, relating to: (i) data property and ownership, (ii) just distribution of benefits and burdens and (iii) the contemporary ethos of science. We argue each reason can be successfully met with corresponding rationale in favour of data sharing. Further support for data sharing has been echoed in policies of health agencies, funding bodies and academic institutions; in documents on the ethical conduct of biomedical research; and in discussions on the nature of public health. From this, we ascertain that sharing data is the morally sound default position. This article then highlights the key roles reciprocity and solidarity play in supporting the practice of data sharing. We conclude with recommendations to regard public health research data as a common-pool resource in order to build a framework for stable data sharing management.

Commentary: the patient's memory stick may complement electronic health records

THE SITUATION DESCRIBED by Stevens1 in the foregoing article is similar to that navigated by thousands of individuals in hospitals around Australia each day. Stevens has been able to identify gaps in communication, processes and timely availability of pertinent information which potentially put her health at risk. There is little doubt that her call for ?legible and enduring record systems accessible by appropriate people? (page 400) would be supported by most of the general community. Health information management is hugely complex, with large numbers of concepts and high rates of clinical knowledge change. Electronic health records (EHRs) are definitely not simple concepts that are solved by storing information in a relational database for use in a single organisational silo, but require the capture of the full breadth of health information in a manner that can be easily stored, retrieved in varying contexts, and searched. Then there is the additional and unique requirement of sharing this same information with a range of health care providers with differing foci, requirements, technical tools and term-sets. When you add in some of the other more lateral requirements such as medico-legal accountability, pooling data for public health research, and privacy, consent and authorisation for sharing sensitive health information, it becomes increasingly evident that health data management has no real equivalent in other industries. In order for shareable electronic health records to become ubiquitous, there are numerous building blocks that need to be in place ? appropriate levels of funding, legislative changes, consensus on a range of standards, stakeholder engagement, implementation of massive change management programs and so on, as outlined by Grain.2 Australia?s solution is the HealthConnect program ? a joint Commonwealth and state government initiative ? which is gradually identifying the required pieces, and laying them out in a systematic way to solve the e-health system puzzle.

Consent for the linkage of data for public health research: is it (or should it be) an absolute pre-requisite?

Data linkage research is being conducted in an evolving and complex environment. The National Health and Medical Research Council's Guidelines Under Section 95 of the Privacy Act 1988 and National Statement on Ethical Conduct of Research Involving Humans allow scope for such research to be legally and ethically acceptable, although conducted without consent. Although the Privacy Amendment (Private Sector) Act 2000 will extend privacy requirements into the private sector and into the areas of health statistics and health service management, it is vital that valid and useful pub lie health research will be allowed to continue in a broadly similar framework.

Consent for the linkage of data for public health research: is it (or should it be) an absolute pre‐requisite?

Data linkage research is being conducted in an evolving and complex environment. The National Health and Medical Research Council's Guidelines Under Section 95 of the Privacy Act 1988 and National Statement on Ethical Conduct of Research Involving Humans allow scope for such research to be legally and ethically acceptable, although conducted without consent. Although the Privacy Amendment (Private Sector) Act 2000 will extend privacy requirements into the private sector and into the areas of health statistics and health service management, it is vital that valid and useful pub lie health research will be allowed to continue in a broadly similar framework.

Survival analysis in public health research.

This paper reviews the common statistical techniques employed to analyze survival data in public health research. Due to the presence of censoring, the data are not amenable to the usual method of analysis. The improvement in statistical computing and wide accessibility of personal computers led to the rapid development and popularity of nonparametric over parametric procedures. The former required less stringent conditions. But, if the assumptions for parametric methods hold, the resulting estimates have smaller standard errors and are easier to interpret. Nonparametric techniques include the Kaplan-Meier method for estimating the survival function and the Cox proportional hazards model to identify risk factors and to obtain adjusted risk ratios. In cases where the assumption of proportional hazards is not tenable, the data can be stratified and a model fitted with different baseline functions in each stratum. Parametric modeling such as the accelerated failure time model also may be used. Hazard functions for the exponential, Weibull, gamma, Gompertz, lognormal, and log-logistic distributions are described. Examples from published literature are given to illustrate the various methods. The paper is intended for public health professionals who are interested in survival data analysis.

Accounting for the public's health: an introduction to selected papers from a U.S. conference on "measuring social inequalities in health".

Accounting for, and being accountable to, the public's health requires carefully documenting and analyzing social inequalities in health. Controversies abound over which measures of socioeconomic position to use, at which points in time, and at what level-e.g., individual, household, and neighborhood. Important debates also concern how to analyze these data and relate them to inequalities involving race/ethnicity and gender. Addressing these complex issues is particularly timely in the light of persistent- and even widening- social inequalities in health. To improve tools for evaluating socioeconomic gradients in health, in 1994 the U.S. Public Health Service and National Institutes of Health sponsored a conference on Measuring Social Inequalities in Health. This introduction to the Section on Social Inequalities in Health introduces five articles presented by participants at the conference. Topics include: a historical review of efforts to measure socioeconomic inequalities in health in the U.S. between 1990 and 1950; income dynamics and health; measuring inequalities in health among nonemployed persons; analyzing links between racial/ethnic and socioeconomic disparities in health; and using neighborhood-based socioeconomic data in public health research. Together, these five articles point to a new emphasis on refining methodologies to assess relationships between social position and health and their expression in population patterns of social inequalities in health.

Collection and local use of accident and emergency hospital data in England.

To obtain information on the collection and local use of accident and emergency data. A postal questionnaire was sent to 248 English accident and emergency (A&E) departments. Responses were obtained from 217 (88%). Only 87 (40%) of departments were fully computerised, with 109 (50%) using manual systems, and 21 (10%) a mixture of both. Significantly more computerised departments reported that they undertook studies (epidemiological, accident prevention, and resource management) than non-computerised departments. Only limited information on the types of injury studied was provided. The most common topics were childhood accidents, road traffic accidents, and poisonings. Staff in 45 departments (21%) reported membership of safety organisations. Around 90% of departments reported that they notified general practitioners and health visitors of their patients' attendance, usually within 3 d of the event. Computerisation appears to help the collection of A&E data for public health research. There is scope to increase the involvement of public health and other workers in epidemiological studies using A&E data. A&E departments should themselves become more involved with local safety organisations.