Search PubMed⌕ Search

SEARCH · Search PubMed

Results for “data accessibility”

Search indexed PubMed citations on genomics, clinical trials, systematic reviews and public health. Explore titles, authors and supplied subject terms, then open the PubMed record.

Quote a phrase for an exact phrase match. Source license links do not imply unrestricted reuse.

At least 685 records · Page 38Linked to original sources
PubMed1981

Professional Standards Review Organizations and confidentiality: the question of public access to medical peer review data through the Freedom of Information Act.

The degree of confidentiality to be accorded data gathered and analyzed by Professional Standards Review Organizations (PSROs) in the course of their medical peer review activities is a crucial and controversial issue in health policy. In late 1977, a consumer organization in Washington, D.C. sought access to data in the hands of the local PSRO through a lawsuit under the Freedom of Information Act, touching off a continuing debate throughout the country. That lawsuit is now on appeal. The courts, the Congress, and the Department of Health and Human Services have all been involved in the ongoing controversy. PSROs, practicing physicians, and health care consumers all have an interest in the outcome. This article analyzes the PSRO Program and its data confidentiality problems, examines in detail the lawsuit that sparked the controversy, and assesses the overall impact of this case on the PSRO program and on federal regulation of the health care system in general.

Civil Rights↗
PubMed1996

Use of food expenditure data to estimate household nutrient accessibility.

The nutritional status of at-risk groups is usually monitored using health statistics. This approach has limitations as individuals are identified only after they have been afflicted by morbidity. In Jamaica, national surveys are carried out in which expenditure data on all consumption items are collected. We used these data to monitor food accessibility in at-risk groups. The identification of decreases in accessibility levels relative to requirements would enable timely intervention before there is a deterioration in nutritional status. We analysed the data from the survey of 3861 households conducted by Statistical and Planning Institutes of Jamaica in 1989. Using the food expenditure data, per capita energy and protein accessibility levels were determined. The mean energy and protein accessibility levels for the sample were 2170 Cals and 64 g, respectively. The results showed that the per capita accessibility levels of 20% and 9% of the households were less than half of requirements for energy and protein, respectively. The situation was worse in rural areas than in urban centres. However, the accessibility levels may have been underestimated as the data did not include meals bought and consumed away from the home, which may be significant to some households. We believe that the use of data from these surveys is a cost-effective way to monitor nutrient accessibility in Jamaica.

Cost-Benefit Analysis↗
PubMed1998

HMO data systems in population studies of access to care.

OBJECTIVES: A review of the current status of HMO data sets and their applicability to population studies of access to care. DATA SOURCES: Publications and reports based on research among different models of HMOs; reviews of HMO quality of care by national organizations; and HMO industry profiles. STUDY DESIGN: Design was a literature review of the content of HMO data sets: completeness of reporting, processing, and reporting. DATA COLLECTION: Publications and publicly available reports were reviewed. PRINCIPAL FINDINGS: Most HMOs are able to aggregate the number of services provided but demonstrate little ability to provide patient profiles. While their content is limited, HMO data sets are significant improvements over indemnity plan data, and where available, their accuracy in measuring health services utilization is superior to that of surveys. There are important differences among HMO delivery systems in their ability to provide useful data for population studies. CONCLUSIONS: A valuable resource, HMO data are limited by their content and the relative inaccessibility to IPAC-HMO information. This could be improved through new financial and technical support to HMOs interested in research.

Community Health Planning↗
PubMed2004

"Utstein style" spreadsheet and database programs based on Microsoft Excel and Microsoft Access software for CPR data management of in-hospital resuscitation.

In 1997, The American Heart Association in association with representatives of the International Committee on Resuscitation (ILCOR) published recommended guidelines for reviewing, reporting and conducting in-hospital cardiopulmonary resuscitation (CPR) outcomes using the "Utstein style". Using these guidelines, we developed two Microsoft Office based database management programs that may be useful to the resuscitation community. We developed a user-friendly spreadsheet based on MS Office Excel. The user enters patient variables such as name, age, and diagnosis. Then, event resuscitation variables such as time of collapse and CPR team arrival are entered from a "code flow sheet". Finally, outcome variables such as patient condition at different time points are recorded. The program then makes automatic calculations of average response times, survival rates and other important outcome measurements. Also using the Utstein style, we developed a database program based on MS Office Access. To promote free public access to these programs, we established at a website. These programs will help hospitals track, analyze, and present their CPR outcomes data. Clinical CPR researchers might also find the programs useful because they are easily modified and have statistical functions.

Cardiopulmonary Resuscitation↗
PubMed2001

The health care information directive.

BACKGROUND: Developments in information technology promise to revolutionise the delivery of health care by providing access to data in a timely and efficient way. Information technology also raises several important concerns about the confidentiality and privacy of health data. New and existing legislation in Europe and North America may make access to patient level data difficult with consequent impact on research and health surveillance. Although research is being conducted on technical solutions to protect the privacy of personal health information, there is very little research on ways to improve individuals power over their health information. This paper proposes a health care information directive, analogous to an advance directive, to facilitate choices regarding health information disclosure. RESULTS AND DISCUSSION: A health care information directive is described which creates a decision matrix that combines the ethical appropriateness of the use of personal health information with the sensitivity of the data. It creates a range of possibilities with in which individuals can choose to contribute health information with or without consent, or not to contribute information at all. CONCLUSION: The health care information directive may increase individuals understanding of the uses of health information and increase their willingness to contribute certain kinds of health information. Further refinement and evaluation of the directive is required.

Advance Directives↗
PubMed2005

The role of informatics in the coordinated management of biological resources collections.

The term 'biological resources' is applied to the living biological material collected, held and catalogued in culture collections: bacterial and fungal cultures; animal, human and plant cells; viruses; and isolated genetic material. A wealth of information on these materials has been accumulated in culture collections, and most of this information is accessible. Digitalisation of data has reached a high level; however, information is still dispersed. Individual and coordinated approaches have been initiated to improve accessibility of biological resource centres, their holdings and related information through the Internet. These approaches cover subjects such as standardisation of data handling and data accessibility, and standardisation and quality control of laboratory procedures. This article reviews some of the most important initiatives implemented so far, as well as the most recent achievements. It also discusses the possible improvements that could be achieved by adopting new communication standards and technologies, such as web services, in view of a deeper and more fruitful integration of biological resources information in the bioinformatics network environment.

Animals↗
PubMed1999

Human body composition: A review of adult dissection data.

Although body composition analysis is popular, dissection data are sparse and sometimes difficult to access. Published data that include the weights of skin, adipose tissue, muscle, and bone, along with body weight, are reviewed. The 31 men and 20 women include 34 cadavers from three separate dissection studies in Brussels, 12 from 19th century reports, and 5 from the United States. The age range was 16-94y. Men differed from women in that they had less adipose tissue and more muscle in both absolute and relative terms. The body mass index (BMI) did not differ between the sexes, because lower weights of muscle and bone compensated for the greater adiposity in women. The relationship between the BMI and relative adiposity was significant, but the BMI explained only about one-third of the variance in adiposity, indicating that in this sample it is a poor predictor of fatness. The composition of the fat-free weight (FFW) and adipose tissue free weight (ATFW), though less variable than body weight, showed enough variability that the assumption of constancy of the fat-free body required for densitometry and other indirect methods of fat estimation, could not be supported. In the few dissections that did fat extraction, essential on non-adipose fat, varied from 4-14% of the FFW, thus undermining the concept of lean body weight. More dissection data are needed, especially in children and adolescents, and especially in conjunction with in vivo body composition methods to help in their validation. Am. J. Hum. Biol. 11:167-174, 1999. Copyright 1999 Wiley-Liss, Inc.

Journal Article↗
PubMed2004

Medicare, Medicaid, and access to dermatologists: the effect of patient insurance on appointment access and wait times.

BACKGROUND: In 2002, the Centers for Medicare and Medicaid Services implemented a 5.4% cut in Medicare physician payments, and further reductions are expected in 2004. These cuts have raised concerns that beneficiaries of Medicare will face significant problems obtaining needed physician services. Although there is clear evidence of poor access to care for patients with Medicaid, data measuring access to physicians for patients with Medicare are sparse. Given current lengthy appointment wait times resulting from a relative shortage of dermatologists, we hypothesized that patients with lower-paying coverage might be more likely to experience appointment refusals, longer wait times, or both. METHODS: Because the ability to obtain timely appointments is a key measure of access, we surveyed dermatologists in 12 medium- and large-sized communities to assess wait times for routine new-patient visits. Dermatologists in these areas (or their staff) received a telephone call asking about the next available appointment for a hypothetical patient with a randomly assigned insurance type (ie, Medicaid, Medicare, or fee-for-service private insurance). RESULTS: Of 631 physicians (or staff members) contacted, 612 (97%) agreed to participate. Overall acceptance rates were similar for patients with Medicare (85%) and private insurance (87%), but were much lower for those with Medicaid (32%). Among patients whose insurance was accepted, mean wait times for patients with Medicare and private insurance were 37 days, but patients with Medicaid experienced significant queuing (50 days). There was dramatic geographic variation. In areas where Medicare payments are low relative to commercial payers, there were increases in Medicare rejection rates and wait times. In communities with relatively low Medicaid payment rates, patients with Medicaid faced higher rejection rates and longer wait times. There were also longer overall wait times for female dermatologists and in communities where the concentration of dermatologists was low. CONCLUSION: Although overall access to dermatologists appears comparable for patients with Medicare and private insurance, some access limitations in "hot spots" where Medicare payments are low relative to commercial insurers suggest that patients in these areas may be most sensitive to further payment reductions. Significant access problems for beneficiaries of Medicaid, particularly in areas where Medicaid payments are relatively low, may be a harbinger of the potential consequences of sustained declines in Medicare physician reimbursement.

Appointments and Schedules↗
PubMed1994

VQLM: a Visual Query Language for Macromolecular structural databases.

Databases of macromolecular structures allow researchers to identify general principles of molecular behavior. They do this by providing a variety of data obtained under a number of different experimental conditions. Many new tools have been developed recently to aid in exploratory analysis of structural data. However, some queries of interest still require considerable manual filtering of data. In particular, studies attempting to make generalizations about complex arrangements of atoms or building blocks in macromolecular structures cannot be approached directly with existing tools. Such studies are frequently carried out on only a few structures or else require a labor-intensive process. To address this problem, we have developed a visual language, VQLM (Visual Query Language for Macromolecules). A query is formulated in this language by drawing an abstract picture of substructures to be searched for in the database and specifying constraints on the objects in them. To illustrate the usefulness of our language, we show how to encode a number of queries that were found scientifically interesting in the published literature in molecular biology. VQLM relies on VQL, a new database language, as its underlying engine for database retrieval and computation. We believe that VQLM will make macromolecular structural data more accessible to scientists, enabling faster and deeper data analysis.

Animals↗
PubMed1998

Challenges of developing a cervical screening information system: the Ontario pilot project.

OBJECTIVE: To create a cervical screening information and reporting system in 2 geographic areas of Ontario. DESIGN: A pilot project involving access to, and linkage of, cervical screening-related cytology, colposcopy and histopathology records for women in the study areas, followed by development and production of woman-specific and aggregate reports. SETTING: Hospital cytology and pathology departments, colposcopy clinics, private cytology laboratories, and the provincial cancer agency (Cancer Care Ontario, formerly the Ontario Cancer Treatment and Research Foundation). MAIN OUTCOME MEASURES: Access to required records; data quality (i.e., standardization, completeness, accuracy); quality of record linkage; utility of reports to evaluators, data sources and physicians. RESULTS: The pilot project was not completed because of a number of major challenges, including multiple data sources requiring separate investigation and negotiations for access; variations in reporting terminology and coding; incompatibility or lack of computer systems; incompleteness of identifiers for record linkage; variation in legislation permitting data access and sharing and in its interpretation; and major financial, resource and time requirements. CONCLUSIONS: Although sufficient will and resources can overcome technical obstacles, changes in legislation will be required to overcome other challenges. Strong links with all sectors involved in cervical screening and attention to changes in the health care system are essential.

Colposcopy↗
PubMed1997

The National Cancer Data Base and physician network.

The National Cancer Data Base (NCDB) is a nationwide outcomes database for oncology presently including 1,600 hospitals in 50 states. Half of all U.S. cancer cases are accessioned annually. It is important for U.S. clinicians and health information management professionals to become familiar with the NCDB to increase the usefulness of this comparative database in their hospital quality assurance programs. The NCDB's unique characteristics include its implementation by clinicians, its provision of access to data from hospitals participating in the Approvals Program of the Commission on Cancer, and its affiliation with a 2,200-member national physician network. The NCDB annual data are augmented by patient care evaluation studies, which provide a capability for cross-sectional surveys with an expanded data set. The NCDB has participated in the significant data standardization effort for U.S. cancer registries. The procedures used maintain confidentiality of the patient, physician, and participating hospital, and physical access to the data files is limited. The three primary products of the NCDB are hospital comparative reports, state and local reports, and scientific reports.

Cancer Care Facilities↗
PubMed2002

A national survey of provisions in clinical-trial agreements between medical schools and industry sponsors.

BACKGROUND: Concerned about threats to the integrity of clinical trials in a research environment increasingly controlled by private interests, the International Committee of Medical Journal Editors (ICMJE) has issued revised guidelines for investigators' participation in the study design, access to data, and control over publication. It is unclear whether research conducted at academic institutions adheres to these new standards. METHODS: From November 2001 through January 2002, we interviewed officials at U.S. medical schools about provisions in their institutions' agreements with industry sponsors of multicenter clinical trials. A subgroup of the respondents were also asked about coordinating-center agreements for such trials. RESULTS: Of the 122 medical schools that are members of the Association of American Medical Colleges, 108 participated in the survey. The median number of site-level agreements executed per institution in the previous year was 103 (interquartile range, 50 to 210). Scores for compliance with a wide range of provisions--from ensuring that authors of reports on multicenter trials have access to all trial data (1 percent [interquartile range, 0 to 21]) to addressing the plan for data collection and monitoring (10 percent [interquartile range, 1 to 50])--demonstrated limited adherence to the standards embodied in the new ICMJE guidelines. Scores for coordinating-center agreements were somewhat higher for most survey items. CONCLUSIONS: Academic institutions routinely engage in industry-sponsored research that fails to adhere to ICMJE guidelines regarding trial design, access to data, and publication rights. Our findings suggest that a reevaluation of the process of contracting for clinical research is urgently needed.

Clinical Trials as Topic↗
PubMed1996

Data and information requirements for determining veterans' access to health care.

The Department of Veterans Affairs (VA) is responding to changing requirements for decision-support data by maximizing the value of data contained in VA and non-VA sources. The data are used to answer questions relating to the accessibility and utilization of VA and non-VA health services. Access studies require accurate estimates of the number of persons served and the number of persons who could be served. To derive these population estimates, VA employs census data to develop projections of the veteran population at the national, state, and county levels. Data from many surveys are used to supplement the census data. Access studies also require quantitative and qualitative data on the characteristics of VA and non-VA health care delivery systems at the national, state, and local levels. The Department of Veterans Affairs obtains health care system data from external sources, including the US Department of Health and Human Services, the American Medical Association, and the American Hospital Association, and from internal sources, including VA surveys and the VA administration inpatient and outpatient files. Utilization studies need more detailed patient-level information than access studies. Data elements pertaining to the reason for health care encounters and the services rendered are obtained from survey data, the VA inpatient and outpatient administration files, the national Medicare database, and state Medicaid databases. The Department of Veterans Affairs'decision-support analyses for eligibility reform and health care system reform demonstrate the effectiveness of VA in analyzing data from many sources.

American Hospital Association↗
PubMed1999

GenBank.

The GenBank (Registered Trademark symbol) sequence database incorporates DNA sequences from all available public sources, primarily through the direct submission of sequence data from individual laboratories and from large-scale sequencing projects. Most submitters use the BankIt (Web) or Sequin programs to format and send sequence data. Data exchange with the EMBL Data Library and the DNA Data Bank of Japan helps ensure comprehensive worldwide coverage. GenBank data is accessible through NCBI's integrated retrieval system, Entrez, which integrates data from the major DNA and protein sequence databases along with taxonomy, genome and protein structure information. MEDLINE (Registered Trademark symbol) s from published articles describing the sequences are included as an additional source of biological annotation through the PubMed search system. Sequence similarity searching is offered through the BLAST series of database search programs. In addition to FTP, Email, and server/client versions of Entrez and BLAST, NCBI offers a wide range of World Wide Web retrieval and analysis services based on GenBank data. The GenBank database and related resources are freely accessible via the URL: http://www.ncbi.nlm.nih.gov

Amino Acid Sequence↗
PubMed2000

Medical information privacy and the conduct of biomedical research.

Profound changes in the health care delivery system, the increasing pervasiveness of information technology, and dramatic advancements in research in human genetics are intensifying public concerns about the privacy of medical information. The author argues that some of these concerns, such as the fear that medical data could be used to deny health insurance or employment, are "pragmatic" and can be dealt with through the political process. But other, "ideologic" concerns tend to generate strong emotions and political positions that impede rational discourse and confound attempts to seek workable compromises. He stresses that the progress of medicine has long depended on studies of collections of empirical data about individuals, and discusses the federal oversight of research involving human subjects, including provisions in place to protect their privacy and maintain the confidentiality of data while at the same time permitting necessary access to data for research. He suggests that since every individual benefits from the accumulated medical knowledge base, everyone should contribute to the ongoing expansion and renewal of that base. The author then states nine principles crafted at the Association of American Medical Colleges to guide its thinking and advocacy efforts regarding medical-information privacy issues. (For example, "the free flow of identifiable medical information within the boundaries of the health care system is essential to the optimum provision of patient care and its payment.") He acknowledges that the flows and uses of identifiable patient information within our complex health care and research systems are bewildering and hard to explain to the public, which is deeply concerned about privacy in general, and especially medical information privacy. How to address this concern and at the same time protect the completeness, accuracy, and integrity of the medical record? The author offers no specific answers beyond those embodied in the AAMC principles, but maintains that a satisfactory solution will come only from carefully crafted federal legislation that creates a comprehensive, uniform, and effective system of workable protections of the confidentiality of medical information, while protecting the access needed to puruse the nation's ambitious agenda in health research.

Confidentiality↗