Data Security and Confidentiality Guidelines

Data Security and Confidentiality Guidelines
Author: Centers for Disease Control and Prevention
Publisher: CreateSpace
Total Pages: 72
Release: 2014-05-28
Genre: Medical
ISBN: 9781499718898

A Goal of CDC's National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention is to strengthen collaborative work across disease areas and integrate services that are provided by state and local programs.

Data Security and Confidentiality Guidelines for HIV, Viral Hepatitis, Sexually Transmitted Disease, and Tuberculosis Programs

Data Security and Confidentiality Guidelines for HIV, Viral Hepatitis, Sexually Transmitted Disease, and Tuberculosis Programs
Author: Centers for Disease Control and Prevention
Publisher: Createspace Independent Pub
Total Pages: 68
Release: 2012-07-20
Genre: Medical
ISBN: 9781478281337

A goal of CDC's National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP) is to strengthen collaborative work across disease areas and integrate services that are provided by state and local programs* for prevention of HIV/AIDS, viral hepatitis, other sexually transmitted diseases (STDs), and tuberculosis (TB). A major barrier to achieving this goal is the lack of standardized data security and confidentiality procedures, which has often been cited as an obstacle for programs seeking to maximize use of data for public health action and provide integrated and comprehensive services. Maintaining confidentiality and security of public health data is a priority across all public health programs. However, policies vary and although disease-specific standards exist for CDC-funded HIV programs, similarly comprehensive CDC standards are lacking for viral hepatitis, STD, and TB prevention programs. Successful implementation of common data protections in state and local health departments with integrated programs suggest implementation of common data security and confidentiality policies is both reasonable and feasible. These programs have benefited from enhanced successful collaborations citing increased completeness of key data elements, collaborative analyses, and gains in program efficiencies as important benefits. Despite the potential benefits, however, policies have not been consistently implemented and the absence of common standards is frequently cited as impeding data sharing and use. Adoption of common practices for securing and protecting data will provide a critical foundation and be increasingly important for ensuring the appropriate sharing and use of data as programs begin to modify policies and increasingly use data for public health action. This document recommends standards for all NCHHSTP programs that, when adopted, will facilitate the secure collection, storage, and use of data while maintaining confidentiality. Designed to support the most desirable practices for enabling secure use of surveillance data for public health action and ensuring implementation of comprehensive evidence-based prevention services, the standards are based on 10 guiding principles that provide the foundation for the collection, storage, and use of these public health data. They address five areas: program policies and responsibilities, data collection and use, data sharing and release, physical security, and electronic data security. Intended for use by state and local health department disease programs to inform the development of policies and procedures, the standards are intentionally broad to allow for differences in public health activities and response across disease programs. The standards, and the guiding principles from which they are derived, are meant to serve as the foundation for more detailed policy development by programs and as a basis for determining if and where improvements are needed. The process includes seven main steps: designating an overall responsible party; performing a standards-based initial assessment of data security and confidentiality protections; developing and maintaining written data security policies and procedures based on assessment findings; developing and implementing training; developing data-sharing plans or agreements as needed; certification of adherence to standards; and performing periodic reviews of policies and procedures. CDC will work with state and local health departments to monitor the implementation of the guidelines and evaluate their impact on securing data, facilitating data use, and increasing program effectiveness.

Guide to Protecting the Confidentiality of Personally Identifiable Information

Guide to Protecting the Confidentiality of Personally Identifiable Information
Author: Erika McCallister
Publisher: DIANE Publishing
Total Pages: 59
Release: 2010-09
Genre: Computers
ISBN: 1437934889

The escalation of security breaches involving personally identifiable information (PII) has contributed to the loss of millions of records over the past few years. Breaches involving PII are hazardous to both individuals and org. Individual harms may include identity theft, embarrassment, or blackmail. Organ. harms may include a loss of public trust, legal liability, or remediation costs. To protect the confidentiality of PII, org. should use a risk-based approach. This report provides guidelines for a risk-based approach to protecting the confidentiality of PII. The recommend. here are intended primarily for U.S. Fed. gov¿t. agencies and those who conduct business on behalf of the agencies, but other org. may find portions of the publication useful.

Protecting Data Privacy in Health Services Research

Protecting Data Privacy in Health Services Research
Author: Institute of Medicine
Publisher: National Academies Press
Total Pages: 208
Release: 2001-01-13
Genre: Computers
ISBN: 0309071879

The need for quality improvement and for cost saving are driving both individual choices and health system dynamics. The health services research that we need to support informed choices depends on access to data, but at the same time, individual privacy and patient-health care provider confidentiality must be protected.

Innovations in Federal Statistics

Innovations in Federal Statistics
Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
Total Pages: 151
Release: 2017-04-21
Genre: Social Science
ISBN: 030945428X

Federal government statistics provide critical information to the country and serve a key role in a democracy. For decades, sample surveys with instruments carefully designed for particular data needs have been one of the primary methods for collecting data for federal statistics. However, the costs of conducting such surveys have been increasing while response rates have been declining, and many surveys are not able to fulfill growing demands for more timely information and for more detailed information at state and local levels. Innovations in Federal Statistics examines the opportunities and risks of using government administrative and private sector data sources to foster a paradigm shift in federal statistical programs that would combine diverse data sources in a secure manner to enhance federal statistics. This first publication of a two-part series discusses the challenges faced by the federal statistical system and the foundational elements needed for a new paradigm.

Registries for Evaluating Patient Outcomes

Registries for Evaluating Patient Outcomes
Author: Agency for Healthcare Research and Quality/AHRQ
Publisher: Government Printing Office
Total Pages: 385
Release: 2014-04-01
Genre: Medical
ISBN: 1587634333

This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

Data Matters

Data Matters
Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
Total Pages: 103
Release: 2019-01-28
Genre: Science
ISBN: 030948247X

In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated dataâ€"this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well. A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domainsâ€"all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.