Small area population disease burden

Small area health statistics has assumed increasing importance as the focus of population and public health moves to a more individualised approach of smaller area populations. Small populations and low event occurrence produce difficulties in interpretation and require appropriate statistical methods, including for age adjustment. There are also statistical questions related to multiple comparisons. Privacy and confidentiality issues include the possibility of revealing information on individuals or health care providers by fine cross-tabulations. Interpretation of small area population differences in health status requires consideration of migrant and Indigenous composition, socioeconomic status and rural-urban geography before assessment of the effects of physical environmental exposure and services and interventions. Burden of disease studies produce a single measure for morbidity and mortality--disability adjusted life year (DALY)--which is the sum of the years of life lost (YLL) from premature mortality and the years lived with disability (YLD) for particular diseases (or all conditions). Calculation of YLD requires estimates of disease incidence (and complications) and duration, and weighting by severity. These procedures often mean problematic assumptions, as does future discounting and age weighting of both YLL and YLD. Evaluation of the Victorian small area population disease burden study presents important cross-disciplinary challenges as it relies heavily on synthetic approaches of demography and economics rather than on the empirical methods of epidemiology. Both empirical and synthetic methods are used to compute small area mortality and morbidity, disease burden, and then attribution to risk factors. Readers need to examine the methodology and assumptions carefully before accepting the results.     

'Confidentiality smokescreens' and carers for people with mental health problems: the perspectives of professionals

This paper reports on some of the findings from a collaborative study funded by the Big Lottery and led by Crossroads Caring for Carers about carers for people with mental health problems. The protection and use of information in mental health are firmly rooted in ethics and professional codes, law and policy, as well as values and professional practice. While government initiatives have attempted to augment the role and rights of carers, policy guidance involving information sharing between professionals and carers has failed to deal with the practical dilemmas of patient confidentiality. Professional codes and training neither explore nor develop the moral and ethical ground that stands between the service user's need for privacy and the carer's need for information. Policy and training guidance on confidentiality is scattered, ambiguous, confusing for professionals and inconsistent. There is uncertainty in practice about the information that professionals may share, and many professionals do not take into account carers' rights, not least to basic information to help them care for service users. 'Confidentiality smokescreens' may sometimes lead to information being withheld from carers. Professionals sometimes find it easier and safer to say nothing. In order to explore these issues from the perspectives of professionals, 65 participants were interviewed. The sample included directors and senior staff from the health, social care and voluntary sectors. Respondents were asked to comment at length on their understanding of confidentiality and information sharing with carers. Findings highlight confidentiality smokescreens that erect barriers that limit effective information sharing; issues involving confidentiality, risk management and carers in crisis; examples of good practice; and the need for the training of professionals on confidentiality issues and the rights of carers. This paper explores the challenge of confidentiality smokescreens from the perspective of professionals, and draws out implications for professional practice and training.     

Privacy,confidentiality and HIV/AIDS health care

Abstract: Privacy and confidentiality are critical issues for people with HIV (human immunodeficiency virus) infection or AIDS (acquired immune deficiency syndrome). This paper reports on a series of 80 detailed interviews conducted in five cities in Australia and New Zealand, within a variety of organisations specialising in the provision of HIV testing and HIV/AIDS treatment services. The aim of the interviews was to survey current practices and procedures relating to the handling of HIV-related health information, and to sample on an informal basis the attitudes of health professionals and HIV-positive persons to specific privacy issues arising with respect to HIV/AIDS health care. The interviews revealed numerous practical issues, innovative procedures, and problems that are of direct relevance to the provision of HIV/AIDS health care services, and to medical practice generally. Despite the genuine commitment to privacy evidenced by most interviewees, the range of examples of careless and blatant breaches of confidentiality indicated by interviewees underscores the need for a concerted effort by those handling HIV information to adhere to legal and professional standards.     

Using Internet GIS technology for sharing health and health related data for the West Midlands Region

Recent government legislation highlights the need for co-operative working by government agencies to improve the overall health of people and to help reduce the existing health inequalities in England. To effectively tackle health inequalities, access to a range of timely and relevant data sets about a region is vital. The Multi-Agency Internet Geographic Information Service (MAIGIS) project is a 3-yr pilot project funded by the Public Health Development Fund to establish an interactive map-based web site for sharing health and health related data for the West Midlands Region (http://maigis.wmpho.org.uk). Data sets within the MAIGIS project follow three broad themes of health, socio-economic and environmental information. Data are made available by different organisations and shared using geography as the linking theme. This paper discusses the use of Internet GIS technology for sharing health and health related data based on the issues that arose during the formative period of the MAIGIS project. Issues such as data confidentiality, amalgamation and copyright are discussed and the technical development of the project is outlined. The links that MAIGIS has formed with other regional and national initiatives for the sharing of health and health related information are also presented. Finally, the future work programme for the MAIGIS project is summarised.     

Privacy and ethics in pediatric environmental health research-part II: protecting families and communities

BACKGROUND: In pediatric environmental health research, information about family members is often directly sought or indirectly obtained in the process of identifying child risk factors and helping to tease apart and identify interactions between genetic and environmental factors. However, federal regulations governing human subjects research do not directly address ethical issues associated with protections for family members who are not identified as the primary "research participant." Ethical concerns related to family consent and privacy become paramount as pediatric environmental health research increasingly turns to questions of gene-environment interactions. OBJECTIVES: In this article I identify issues arising from and potential solutions for the privacy and informed consent challenges of pediatric environmental health research intended to adequately protect the rights and welfare of children, family members, and communities. DISCUSSION: I first discuss family members as secondary research participants and then the specific ethical challenges of longitudinal research on late-onset environmental effects and gene-environment interactions. I conclude with a discussion of the confidentiality and social risks of recruitment and data collection of research conducted within small or unique communities, ethnic minority populations, and low-income families. CONCLUSIONS: The responsible conduct of pediatric environmental health research must be conceptualized as a goodness of fit between the specific research context and the unique characteristics of subjects and other family stakeholders.     

EpiQMS: an Internet application for access to public health data for citizens, providers, and public health investigators.

Access to epidemiologic data is critical to public health practice. Unfortunately, most published data are out of date and live databases are inaccessible because of issues of confidentiality, varying user needs, cost, security concerns, and other reasons. EpiQMS is a Web-based application that allows exploratory, statistical, and geographic analysis of public health data. Tables, graphs, and maps with adjustments for small areas are available at three levels: (1) the general public, (2) public health and medical practitioners, and (3) epidemiologists and health officers. The difference in each level is with respect to the presentation of small cell sizes and small geographies as set by the data set custodians.     

Confidentiality and freedom of information for epidemiological data in governmental research

The issues of confidentiality and freedom of information are discussed for studies involving health surveillance around point sources of pollution. The problems discussed are related to protecting data after a study has been initiated. Research studies describing the impact of confidentiality on response rates are discussed. The U.S. Environmental Protection Agency's current and proposed procedures for handling and releasing these data are presented. These can be used by other agencies in defining their security procedures     

Communicating occupational and environmental issues

Effective health risk communication is an important tool that can prevent or modify the inappropriate public reactions that often accompany occupational and environmental health issues and allegations. The public perception of the magnitude or significance of risk is influenced by factors other than scientific data. The goal of risk communication therefore is more than just imparting scientific facts. It is about ensuring that the public fully understand risk and that they are enabled to make informed decisions under conditions of uncertainty. How people perceive risk, and their values and feelings toward occupational and environmental health issues, are as important considerations for risk communication as are numerical or factual scientific data. Occupational and environmental health scares often occur because of complexities such as the multidimensionality of risk, trust or mistrust in sources of information, technological revolution, the reliance of the public on the media for health information and the public desire for information and the truth. If, as health professionals, we are to address effectively both real and perceived occupational and environmental health issues, we need to be aware of the major advances that have been made in the use of risk communication in recent years.     

Spatial filtering using a raster geographic information system: methods for scaling health and environmental data

Despite the use of geographic information systems (GIS) in academic research, it is still uncommon for public health officials to use such tools for addressing health and environmental issues. Complexities in methodological issues for addressing relationships between health and environment, investigating spatial variation of disease, and addressing spatial demand and supply of health care service, hinder the use of GIS in the health sector. This paper demonstrates simple spatial filtering methods for analyzing health and environmental data using a raster GIS. Computing spatial moving average rates reduces individual affects and creates a continuous surface of phenomena. Another spatial analytical method discussed is computation of exposure status surfaces including neighbors' influences weighted by distance decay. These methods describe how health and environmental data can be scaled in order to better address health problems. Spatial filtering methods are demonstrated using health and population surveillance data within a GIS that were collected for approximately 210,000 people in Matlab, Bangladesh.     

Maintaining the confidentiality of computerized mental health outcome data

The emergence of managed behavioral health care has increased the value of data describing outcomes of mental health treatment. At the same time, increased development of the national information infrastructure and other computer linkage systems has facilitated the flow of information among a wide network of data systems. These two developments create a dynamic tension between the need to share information and the need to protect the privacy of mental health clients and the confidentiality of their computerized records. This problem is exacerbated by the cost associated with potential solutions. Unfortunately, policy development in this area has lagged behind rapid developemnts in technology. The mental health administrator must balance the three components of this conflict (the increasing need for information transfer, the protection of confidentiality, and cost) without a great deal of guidance. This article offers recommendations that may help the mental health administrator manage this conflict.     

Considerations for using a geographic information system to assess environmental supports for physical activity

The use of a geographic information system (GIS) to study environmental supports for physical activity raises several issues, including acquisition and development, quality, and analysis.

We recommend to public health professionals interested in using GIS that they investigate available data, plan for data development where none exists, ensure the availability of trained personnel and sufficient time, and consider issues such as data quality, analyses, and confidentiality.

This article shares information about data-related issues that we encountered when using GIS to validate responses to a questionnaire about environmental supports for physical activity.

     

Breach of confidentiality

This has been a simple overview of confidentiality and documentation for health information leaders. However, it was no simple issue for 'Mary' or the health information manager. The important issue of confidentiality should not be neglected. We need to be concerned with confidentiality education and awareness for all healthcare employees. We are health information leaders, so we should take every opportunity to promote the tenets of confidentiality.     

Implementation of an Internet-based geographic information system: the Florida experience.

Increasingly, Web-based data dissemination systems are being used to provide public health information. This article describes Florida's experience in augmenting a Web-based data query system, Florida CHARTS, with a geographic information system component. As with any systems development, users' needs guide the product. With a focus on community health assessment and improvement planning, several methods of data display have been established. A variety of issues are explored including the impact of small numbers of events on data display and data confidentiality, the selection of geographic units of analysis, and techniques for geographically coding data.     

Standards for confidentiality, privacy, access, and data security

The American Society for Testing and Materials (ASTM), an accredited standards development organization with a focus on health care informatics, has recently produced a standards document on the principles of confidentiality, privacy, access, and data security. The ASTM subcommittee responsible for this work is ASTM 31.17. The article discusses the link between voluntary health informatics standards and issues such as confidentiality and data security in computerized health information systems.     

Patient confidentiality in the research use of clinical medical databases

Electronic medical record keeping has led to increased interest in analyzing historical patient data to improve care delivery. Such research use of patient data, however, raises concerns about confidentiality and institutional liability. Institutional review boards must balance patient data security with a researcher's ability to explore potentially important clinical relationships. We considered the issues involved when patient records from health care institutions are used in medical research. We also explored current regulations on patient confidentiality, the need for identifying information in research, and the effectiveness of deidentification and data security. We will present an algorithm for researchers to use to think about the data security needs of their research, and we will introduce a vocabulary for documenting these techniques in proposals and publications.     

Making public health data available to community-level decision makers--goals, issues, and a case report.

Effective community health assessment and planning depends on the availability of appropriate public health data. Web-based technologies have created an unprecedented opportunity for making data available to community-level public health decision makers. An interactive data retrieval system targeted to the community-level user must provide an intuitive and easy-to-learn user interface with functionality and statistical complexity appropriate to the expected users while maintaining confidentiality of personal health information. The authors use the Missouri Information for Community Assessment Web site as an example to discuss goals and issues involved in the development of such systems.     

A Local Community Health Survey: Findings From A Population-Based Survey Of The Largest Jewish Community In Chicago

Accurate estimates of health risk factors and outcomes are difficult to obtain for certain ethnic populations. The health of Jewish individuals is particularly hard to determine because of the small group size and because health data rarely include information on religious affiliation. Furthermore, local level health information (for any population subgroup) is limited. To assess health risk factors and outcomes, as well as issues related to access to care, within a Jewish community in Chicago, a group of community agencies and researchers initiated a unique, population-based health survey. Specifically, a three-stage sampling design was used to select a representative sample of 201 adults and 58 children in the most concentrated Jewish neighborhood in the city. Nearly 500 questions were asked, covering a wide variety of demographic, socioeconomic, and health-related topics. The findings revealed that these Jewish individuals were generally as healthy (or healthier) than the average residents of Chicago and the U.S.; however, many serious health concerns still existed. In particular, health problems such as obesity, depression, disability, and domestic violence were common and, in some cases, more prevalent than in the general population. This local level information provides the first accurate estimates of key health variables for the estimated 23,000 Jewish individuals living in this community. This type of data is essential because it enables the efforts and priorities of health and social service providers to be focused on the most pressing health problems. Moreover, this project provides an example for other population subgroups (based on residence, ethnicity, religious affiliation, country of origin, or other characteristics) who would benefit from local level health information.     

Issues in the accessibility and confidentiality of patient records

Traditional understandings of confidentiality are no longer sufficient to deal with the privacy issues raised by a modern health care system. Patient data are increasingly kept by large and relatively faceless institutions. Disclosure of health information is not an exception, but a matter of daily routine, not only for uses within the health care system itself, but also for various social purposes. This paper highlights a number of issues, related to these structural changes. A distinction is made between four main problem areas: basic issues, collection and keeping of data, patient access to records, disclosure of individually identifiable data. Under each heading, four issues are discussed.     

The role of demographic surveillance systems (DSS) in assessing the health of communities: an example from rural Ethiopia

Longitudinal demographic surveillance systems (DSSs) in selected populations can provide important information in situations where routine health information is incomplete or absent, particularly in developing countries. The Butajira Rural Health Project is one such example, initiated in rural Ethiopia in 1987. DSSs rely on regular community-based surveillance as a means of vital event registration, among a sufficient population base to draw meaningful conclusions about rates and trends in relatively rare events such as maternal death. Enquiries into specific health problems can also then use this framework to quantify particular issues or evaluate interventions. Demographic characteristics and trends for a rural Ethiopian population over a 10-y period are presented as an illustration of the DSS approach, based on 336 000 person-years observed. Overall life expectancy at birth was 50 y. Demographic parameters generally showed modest trends towards improvement over the 10-y period.The DSS approach is useful in characterising populations at the community level over a period of time, providing important information for health planning and intervention. Methodological issues underlying this approach need further exploration and development.