People with ID represent approximately 2% of the population and, as a group, experience poorer health than the general population. This article presents recent conceptualizations that begin to disentangle health from disability, summarizes the literature from 1999 to 2005 in terms of the cascade of disparities, reviews intervention issues and promising practices, and provides recommendations for future action and research. The reconceptualization of health and disability examines health disparity in terms of the determinants of health (genetic, social circumstances, environment, individual behaviors, health care access) and types of health conditions (associated, comorbid, secondary). The literature is summarized in terms of a cascade of disparities experienced by people with ID, including a higher prevalence of adverse conditions, inadequate attention to care needs, inadequate focus on health promotion, and inadequate access to quality health care services. Promising practices are reviewed from the perspective of persons with ID, providers of care and services, and policies that influence systems of care. Recommendations across multiple countries and organizations are synthesized as guidelines to direct future action. They call for promoting principles of early identification, inclusion, and self-determination of people with ID; reducing the occurrence and impact of associated, comorbid, and secondary conditions; empowering caregivers and family members; promoting healthy behaviors in people with ID; and ensuring equitable access to quality health care by people with ID. Their broadscale implementations would begin to reduce the health disparity experienced by people with ID.
BackgroundSocial networking sites (SNSs) have the potential to increase the reach and efficiency of essential public health services, such as surveillance, research, and communication.ObjectiveThe objective of this study was to conduct a systematic literature review to identify the use of SNSs for public health research and practice and to identify existing knowledge gaps.MethodsWe performed a systematic literature review of articles related to public health and SNSs using PubMed, EMBASE, and CINAHL to search for peer-reviewed publications describing the use of SNSs for public health research and practice. We also conducted manual searches of relevant publications. Each publication was independently reviewed by 2 researchers for inclusion and extracted relevant study data.ResultsA total of 73 articles met our inclusion criteria. Most articles (n=50) were published in the final 2 years covered by our search. In all, 58 articles were in the domain of public health research and 15 were in public health practice. Only 1 study was conducted in a low-income country. Most articles (63/73, 86%) described observational studies involving users or usages of SNSs; only 5 studies involved randomized controlled trials. A large proportion (43/73, 59%) of the identified studies included populations considered hard to reach, such as young individuals, adolescents, and individuals at risk of sexually transmitted diseases or alcohol and substance abuse. Few articles (2/73, 3%) described using the multidirectional communication potential of SNSs to engage study populations.ConclusionsThe number of publications about public health uses for SNSs has been steadily increasing in the past 5 years. With few exceptions, the literature largely consists of observational studies describing users and usages of SNSs regarding topics of public health interest. More studies that fully exploit the communication tools embedded in SNSs and study their potential to produce significant effects in the overall population’s health are needed.
BackgroundThe older adult population (65 years or older) in the United States is growing, and it is important for communities to consider ways to support the aging population. Patient portals and electronic personal health records (ePHRs) are technologies that could better serve populations with the highest health care needs, such as older adults.ObjectiveThe aim of this study was to assess the existing research landscape related to patient portal and ePHR use and experience among older adults and to understand the benefits and barriers to older adults’ use and adoption of patient portals and ePHRs.MethodsWe searched six pertinent bibliographic databases for papers, published from 2006 to 2016 and written in English, that focused on adults 60 years or older and their use of or experience with patient portals or ePHRs. We adapted preferred reporting items for systematic reviews and meta-analyses (PRISMA) guidelines to review papers based on exclusion and inclusion criteria. We then applied thematic analysis to identify key themes around use, experience, and adoption.ResultsWe retrieved 199 papers after an initial screening and removal of duplicate papers. Then we applied an inclusion and exclusion criteria, resulting in a final set of 17 papers that focused on 15 separate projects. The majority of papers described studies involving qualitative research, including interviews and focus groups. They looked at the experience and use of ePHRs and patient portals. Overall, we found 2 main barriers to use: (1) privacy and security and (2) access to and ability to use technology and the Internet. We found 2 facilitators: (1) technical assistance and (2) family and provider advice. We also reported on older adults’ experience, including satisfaction with the system and improvement of the quality of their health care. Several studies captured features that older adults wanted from these systems such as further assistance managing health-related tasks and contextual health advice and tips.ConclusionsMore research is needed to better understand the patient portal experience among older adults from initial use to adoption. There are also opportunities to explore the role of design in addressing barriers and supporting facilitators to patient portal and ePHR use. Finally, the future use of these systems by older adults should be anticipated and considered in the design process.
Utilizing a novel search method that included the diversity of information resources public health practitioners use, has produced a richer and more useful picture of the information needs of the public health workforce than other literature reviews. There is a critical need for public health digital knowledge management systems designed to reflect the diversity of public health activities, to enable human communications, and to provide multiple access points to critical information resources. Public health librarians and other information specialists can serve a significant role in helping public health professionals meet their information needs through the development of evidence-based decision support systems, human-mediated expert searching and training in the use information retrieval systems.
The results indicate that machine translation plus postediting may be an effective method of producing multilingual health materials with equivalent quality but lower cost compared to manual translations.
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