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1.  Information Technology for Children's Health and Health Care 
In September 2000, the Agency for Healthcare Quality and Research and the American Academy of Pediatrics Center for Child Health Research sponsored a meeting of experts and knowledgeable stakeholders to identify 1) the special information needs of pediatric care and 2) health service research questions related to the use of information technology in children's health care. Technologies that support the care of children must address issues related to growth and development, children's changing physiology, and the unique diseases of children and interventions of pediatric care. Connectivity and data integration are particular concerns for child health care workers. Consumer health information needs for this population extend beyond the needs of one individual to the needs of the family. Recommendations of the attendees include rapid implementation of features in electronic health information systems that support pediatric care and involvement of child health experts in policy making, standards setting, education, and advocacy. A proposed research agenda should address both effectiveness and costs of information technology, with special consideration for the needs of children, the development and evaluation of clinical decision support in pediatric settings, understanding of the epidemiology of iatrogenic injury in childhood, supplementation of vocabulary standards with pediatrics-specific terminology, and improvement in health care access for children, using telemedicine.
PMCID: PMC130065  PMID: 11687562
2.  Setting the Public Agenda for Online Health Search: A White Paper and Action Agenda 
Background
Searches for health information are among the most common reasons that consumers use the Internet. Both consumers and quality experts have raised concerns about the quality of information on the Web and the ability of consumers to find accurate information that meets their needs.
Objective
To produce a national stakeholder-driven agenda for research, technical improvements, and education that will improve the results of consumer searches for health information on the Internet.
Methods
URAC, a national accreditation organization, and Consumer WebWatch (CWW), a project of Consumers Union (a consumer advocacy organization), conducted a review of factors influencing the results of online health searches. The organizations convened two stakeholder groups of consumers, quality experts, search engine experts, researchers, health-care providers, informatics specialists, and others. Meeting participants reviewed existing information and developed recommendations for improving the results of online consumer searches for health information. Participants were not asked to vote on or endorse the recommendations. Our working definition of a quality Web site was one that contained accurate, reliable, and complete information.
Results
The Internet has greatly improved access to health information for consumers. There is great variation in how consumers seek information via the Internet, and in how successful they are in searching for health information. Further, there is variation among Web sites, both in quality and accessibility. Many Web site features affect the capability of search engines to find and index them.
Conclusions
Research is needed to define quality elements of Web sites that could be retrieved by search engines and understand how to meet the needs of different types of searchers. Technological research should seek to develop more sophisticated approaches for tagging information, and to develop searches that "learn" from consumer behavior. Finally, education initiatives are needed to help consumers search more effectively and to help them critically evaluate the information they find.
doi:10.2196/jmir.6.2.e18
PMCID: PMC1550592  PMID: 15249267
eHealth; Internet; information management; health services research; quality of health care; consumer participation; patient education
3.  Current Challenge in Consumer Health Informatics: Bridging the Gap between Access to Information and Information Understanding 
The number of health-related websites has proliferated over the past few years. Health information consumers confront a myriad of health related resources on the internet that have varying levels of quality and are not always easy to comprehend. There is thus a need to help health information consumers to bridge the gap between access to information and information understanding—i.e. to help consumers understand health related web-based resources so that they can act upon it. At the same time health information consumers are becoming not only more involved in their own health care but also more information technology minded. One way to address this issue is to provide consumers with tailored information that is contextualized and personalized e.g. directly relevant and easily comprehensible to the person's own health situation. This paper presents a current trend in Consumer Health Informatics which focuses on theory-based design and development of contextualized and personalized tools to allow the evolving consumer with varying backgrounds and interests to use online health information efficiently. The proposed approach uses a theoretical framework of communication in order to support the consumer's capacity to understand health-related web-based resources.
PMCID: PMC2858407  PMID: 20419038
consumer health information; internet; contextualization of information; personalization
4.  Cluster-randomised trial to evaluate the ‘Change for Life’ mass media/ social marketing campaign in the UK 
BMC Public Health  2012;12:404.
Background
Social marketing campaigns offer a promising approach to the prevention of childhood obesity. Change4Life (C4L) is a national obesity prevention campaign in England. It included mass media coverage aiming to reframe obesity into a health issue relevant to all and provided the opportunity for parents to complete a brief questionnaire (‘How are the Kids’) and receive personalised feedback about their children’s eating and activity. Print and online C4L resources were available with guidance about healthy eating and physical activity. The study aims were to examine the impact of personalised feedback and print material from the C4L campaign on parents’ attitudes and behaviours about their children’s eating and activity in a community-based cluster-randomised controlled trial.
Methods
Parents of 5–11 year old children were recruited from 40 primary schools across England. Schools were randomised to intervention or control (‘usual care’). Basic demographic data and brief information about their attitudes to their children’s health were collected. Families in intervention schools were mailed the C4L print materials and the ‘How are the Kids’ questionnaire; those returning the questionnaire were sent personalised feedback and others received generic materials. Outcomes included awareness of C4L, attitudes to the behaviours recommended in C4L, parenting behaviours (monitoring and modelling), and child health behaviours (diet, physical activity and television viewing). Follow-up data were collected from parents by postal questionnaire after six months. Qualitative interviews were carried out with a subset of parents (n = 12).
Results
3,774 families completed baseline questionnaires and follow-up data were obtained from 1,419 families (37.6%). Awareness was high in both groups at baseline (75%), but increased significantly in the intervention group by follow-up (96% vs. 87%). Few parents (5.2% of the intervention group) returned the questionnaire to get personalised feedback. There were few significant group differences in parental attitudes or parenting and child health behaviours at follow-up. Physical activity was rated as less important in the intervention group, but a significant group-by-socioeconomic status (SES) interaction indicated that this effect was confined to higher SES families. Similar interactions were also seen for physical activity monitoring and child television time; with adverse effects in higher SES families and no change in the lower SES families. Effects were little better in families that completed the questionnaire and received personalised feedback. At interview, acceptability of the intervention was modest, although higher in lower SES families.
Conclusions
The C4L campaign materials achieved increases in awareness of the campaign, but in this sample had little impact on attitudes or behaviour. Low engagement with the intervention appeared a key issue.
Trial registration number
Current Controlled Trials ISRCTN00791709.
doi:10.1186/1471-2458-12-404
PMCID: PMC3541256  PMID: 22672587
5.  Insights from Parents about Caring for a Child with Birth Defects 
Birth defects affect 1 in 33 babies. Having a child with a birth defect impacts the whole family. Parents of children who have birth defects face unique challenges and desire to make life better for their kids. They also want to help to prevent birth defects in the future. Some of the challenges parents face involve communication with healthcare professionals, quality of life issues, creating awareness and advocating for research and funding, finding resources and support, and helping teens transition to appropriate, specialized adult care. This paper addresses these issues and their sub-issues, provides examples, and makes suggestions for improvement and research.
doi:10.3390/ijerph10083465
PMCID: PMC3774449  PMID: 23965922
birth defects; parents; quality of life; communication; transition of care; prevention; advocacy; awareness; NBDPN
6.  Child health records: are they valid and useful to children and pediatric practitioners? 
Children are important consumers of health care, yet neither children nor their clinical practitioners have received much attention from the health informatics community. Child health needs differ from those of adults, and the purpose of health encounters for children focus to a greater extent on health promotion and evaluation of developmental milestones. The early childhood period is critical because it is during this time the children develop the expectations and attitudes about health care that they will carry with them throughout their lives. The primary purpose of this project is to examine the congruence in communication between children and pediatric practitioners. From this examination implications will be drawn for designing pediatric clinical records and developing strategies for determining the extent to which the record serve the child's health information needs and the clinician's health service delivery needs.
PMCID: PMC2232094  PMID: 9929260
7.  MedCIRCLE - Collaboration for Internet Rating, Certification, Labeling and Evaluation of Health Information on the Semantic World Wide Web 
MedCIRCLE (www.medcircle.info) is a semantic web project to develop and promote technologies able to guide consumers to trustworthy health information on the Internet and to establish a global web of trust for networked health information. Gateway sites for consumer health information (CisMEF, AQUMED, Certified Medical Web Site Seal of METGES online) will use HIDDEL metadata (Health Information Disclosure, Description and Evaluation Language, expressed in XML/RDF Syntax) to make their annotation and evaluation data machine-processable and accessible for software-agents. Other health subject gateways, accreditation, or rating services are invited to join the collaboration by implementing HIDDEL on their gateways. Expressing self-descriptive or third-party evaluations a machine-processable format allows intelligent agents or client-side software to harvest statements and opinions about the trustworthiness of other websites and assist users in selecting trustworthy websites. The MedCIRCLE project builds on, expands and continues work on rating health information on the Internet piloted within the MedCERTAIN project. While MedCERTAIN provided the core technologies and software for rating and “trustmarking” health information, MedCIRCLE is built around these technologies and involves a wider medical community to assess health information, demonstrating the power of collaborative and interoperable evaluations on the world-wide-web. Other specific aims include refinement and expansion of HIDDEL, to become a standard vocabulary and interchange format for self- and third-party ratings of health information.
PMCID: PMC2244272
8.  Trusted Online Sources of Health Information: Differences in Demographics, Health Beliefs, and Health-Information Orientation 
Background
The recent surge in online health information and consumer use of such information has led to expert speculations and prescriptions about the credibility of health information on the World Wide Web. In spite of the growing concern over online health information sources, existing research reveals a lacuna in the realm of consumer evaluations of trustworthiness of different health information sources on the Internet.
Objective
This study examines consumer evaluation of sources of health information on the World Wide Web, comparing the demographic, attitudinal, and cognitive differences between individuals that most trust a particular source of information and individuals that do not trust the specific source of health information. Comparisons are made across a variety of sources.
Methods
The Porter Novelli HealthStyles database, collected annually since 1995, is based on the results of nationally-representative postal-mail surveys. In 1999, 2636 respondents provided usable data for the HealthStyles database. Independent sample t tests were conducted to compare the respondents in the realm of demographic, attitudinal, and cognitive variables.
Results
The most trusted sources of online health information included the personal doctor, medical university, and federal government. The results demonstrated significant differences in demographic and health-oriented variables when respondents who trusted a particular online source were compared with respondents that did not trust the source, suggesting the need for a segmented approach to research and application. Individuals trusting the local doctor were younger ( t 2634= 4.02, P< .001) and held stronger health beliefs (F 1= 5.65, P= .018); individuals trusting the local hospital were less educated ( t 2634= 3.83, P< .001), low health information oriented (F 1= 6.41, P= .011), and held weaker health beliefs (F 1= 5.56, P= .018). Respondents with greater trust in health insurance companies as online health information sources were less educated ( t 2634= 1.90, P= .05) and less health information oriented (F 1= 4.30, P= .04). Trust in medical universities was positively associated with education ( t 2634= 11.83, P< .001), income ( t 2634= 10.19, P< .001), and health information orientation (F 1= 10.32, P<.001). Similar results were observed in the realm of federal information credibility, with individuals with greater trust in federal sources being more educated ( t 2634= 7.45, P< .001) and health information oriented (F 1= 4.45, P= .04) than their counterparts.
Conclusions
The results suggest systematic differences in the consumer segment based on the different sources of health information trusted by the consumer. While certain sources such as the local hospital and the health insurance company might serve as credible sources of health information for the lower socioeconomic and less health-oriented consumer segment, sources such as medical universities and federal Web sites might serve as trustworthy sources for the higher socioeconomic and more health-oriented groups.
doi:10.2196/jmir.5.3.e21
PMCID: PMC1550562  PMID: 14517112
Internet; source credibility; demographics; beliefs; health beliefs; health consciousness; consumer
9.  Developing Informatics Tools and Strategies for Consumer-centered Health Communication 
As the emphasis on individuals' active partnership in health care grows, so does the public's need for effective, comprehensible consumer health resources. Consumer health informatics has the potential to provide frameworks and strategies for designing effective health communication tools that empower users and improve their health decisions. This article presents an overview of the consumer health informatics field, discusses promising approaches to supporting health communication, and identifies challenges plus direction for future research and development. The authors' recommendations emphasize the need for drawing upon communication and social science theories of information behavior, reaching out to consumers via a range of traditional and novel formats, gaining better understanding of the public's health information needs, and developing informatics solutions for tailoring resources to users' needs and competencies. This article was written as a scholarly outreach and leadership project by members of the American Medical Informatics Association's Consumer Health Informatics Working Group.
doi:10.1197/jamia.M2744
PMCID: PMC2442255  PMID: 18436895
10.  MedCERTAIN: quality management, certification and rating of health information on the Net. 
MedCERTAIN (MedPICS Certification and Rating of Trustworthy Health Information on the Net, http://www.medcertain.org/) is a recently launched international project funded under the European Union's (EU) "Action Plan for safer use of the Internet. It provides a technical infrastructure and a conceptual basis for an international system of "quality seals", ratings and self-labelling of Internet health information, with the final aim to establish a "trustmark" for networked health information. Digital "quality seals" are evaluative metadata (using standards such as PICS = Platform for Internet Content Selection, now being replaced by RDF/XML) assigned by trusted third-party raters. The project also enables and encourages self-labelling with descriptive meta-information by web authors. Together these measures will help consumers as well as professionals to identify high-quality information on the Internet. MedCERTAIN establishes a fully functional demonstrator for a self- and third-party rating system enabling consumers and professionals to filter harmful health information and to positively identify and select high quality information. We aim to provide a system which allows citizens to place greater trust in networked information, exemplified in the domain of health information, whilst also making a significant contribution for similar projects with different target domains. The project will demonstrate how PICS-based content rating and filtering technologies can automate and exploit value-adding resource description services. It further proposes standards for interoperability of rating services.
PMCID: PMC2244104  PMID: 11079879
11.  Evaluation of Safe Kids Week 2001: prevention of scald and burn injuries in young children 
Injury Prevention  2003;9(2):112-116.
Objective: To evaluate Safe Kids Week 2001—a national public awareness campaign on scald and burn prevention—run by Safe Kids Canada.
Design: Random digit dial telephone survey.
Setting: Canada.
Subjects: Parents or guardians of children under 9 years. Two groups of parents were compared, those "exposed" to the campaign (defined as having "seen, heard, or read anything about scald and burn prevention during the period 28 May to 3 June 2001") and those "unexposed" to the campaign.
Intervention: Burn safety information was disseminated via the media, 5000 retail stores, and 348 community partners across Canada. The campaign emphasized four key messages: (1) Lower your water temperature, hot tap water could burn your child! (2) Make sure your child is safe in the kitchen. (3) Keep hot drinks away from your child. (4) Check your smoke alarms regularly.
Outcome measures: Change in parental knowledge and behavior.
Results: A total of 29 871 telephone numbers were called, with a household refusal rate of 27%. Nationally, 14% of parents were exposed to the campaign and 504 parents were interviewed, 251 in the "exposed" group and 253 in the "unexposed" group. Parents exposed to Safe Kids Week 2001 were 1.5–5 times more likely to be aware of key campaign messages, and 2–3 times more likely to test and lower the water heater temperature, compared with unexposed parents.
Conclusion: Safe Kids Week 2001 reached a significant proportion of parents of young children. In addition, the campaign appeared to increase burn safety knowledge and lead to behavior changes among exposed parents, compared with unexposed parents.
doi:10.1136/ip.9.2.112
PMCID: PMC1730947  PMID: 12810735
12.  Quality Management, Certification and Rating of Health Information on the Net with MedCERTAIN: Using a medPICS/RDF/XML metadata structure for implementing eHealth ethics and creating trust globally 
MedCERTAIN (MedPICS Certification and Rating of Trustworthy Health Information on the Net, http://www.medcertain.org/) is a recently launched international project funded under the European Union's (EU) "Action Plan for safer use of the Internet". It provides a technical infrastructure and a conceptual basis for an international system of "quality seals", ratings and self-labelling of Internet health information, with the final aim to establish a global "trustmark" for networked health information. Digital "quality seals" are evaluative metadata (using standards such as PICS=Platform for Internet Content Selection, now being replaced by RDF/XML) assigned by trusted third-party raters. The project also enables and encourages self-labelling with descriptive metainformation by web authors. Together these measures will help consumers as well as professionals to identify high-quality information on the Internet. MedCERTAIN establishes a fully functional demonstrator for a self- and third-party rating system enabling consumers and professionals to filter harmful health information and to positively identify and select high quality information. We aim to provide a trustmark system which allows citizens to place greater confidence in networked information, to encourage health information providers to follow best practices guidelines such as the Washington eHealth Code of Ethics, to provide effective feedback and law enforcement channels to handle user complaints, and to stimulate medical societies to develop standard for patient information. The project further proposes and identifies standards for interoperability of rating and description services (such as libraries or national health portals) and fosters a worldwide collaboration to guide consumers to high-quality information on the web.
doi:10.2196/jmir.2.suppl2.e1
PMCID: PMC1761877
13.  Predictive modelling: parents’ decision making to use online child health information to increase their understanding and/or diagnose or treat their child’s health 
Background
The quantum increases in home Internet access and available online health information with limited control over information quality highlight the necessity of exploring decision making processes in accessing and using online information, specifically in relation to children who do not make their health decisions. The aim of this study was to understand the processes explaining parents’ decisions to use online health information for child health care.
Methods
Parents (N = 391) completed an initial questionnaire assessing the theory of planned behaviour constructs of attitude, subjective norm, and perceived behavioural control, as well as perceived risk, group norm, and additional demographic factors. Two months later, 187 parents completed a follow-up questionnaire assessing their decisions to use online information for their child’s health care, specifically to 1) diagnose and/or treat their child’s suspected medical condition/illness and 2) increase understanding about a diagnosis or treatment recommended by a health professional.
Results
Hierarchical multiple regression showed that, for both behaviours, attitude, subjective norm, perceived behavioural control, (less) perceived risk, group norm, and (non) medical background were the significant predictors of intention. For parents’ use of online child health information, for both behaviours, intention was the sole significant predictor of behaviour. The findings explain 77% of the variance in parents’ intention to treat/diagnose a child health problem and 74% of the variance in their intentions to increase their understanding about child health concerns.
Conclusions
Understanding parents’ socio-cognitive processes that guide their use of online information for child health care is important given the increase in Internet usage and the sometimes-questionable quality of health information provided online. Findings highlight parents’ thirst for information; there is an urgent need for health professionals to provide parents with evidence-based child health websites in addition to general population education on how to evaluate the quality of online health information.
doi:10.1186/1472-6947-12-144
PMCID: PMC3529696  PMID: 23228171
Online health information; Child health; Child health information seeking; Theory of planned behaviour; Risk taking; Group norm; Parental decision making; Internet use
14.  Improving the quality of healthcare for children: implementing the results of the AHSR research agenda conference. 
Health Services Research  1998;33(4 Pt 2):955-976.
OBJECTIVE: To describe the rationale, development, content, and results of the AHSR-sponsored conference on developing a research agenda focused on improving the quality of care for children. DATA SOURCES AND METHODS: Planning documents, background papers, and conference proceedings. PRINCIPAL FINDINGS: The conference developed the research agenda focused on (1) monitoring the health of children; (2) evaluating the efficacy and effectiveness of health services for children; (3) assessing the quality of healthcare provided to children; (4) improving the quality of healthcare within health systems; (5) assessing the performance of community systems for children; (6) exploring the impact of different financial incentives on the provision of pediatric healthcare; and (7) developing and disseminating clinical practice guidelines and other information to physicians, families, and consumers. Specific issues and research questions in each area are also presented. Strategies for implementing the research agenda are presented and include: (1) expanding the child health services research workforce; (2) developing child healthcare quality improvement research centers; (3) conducting research in specific high-priority areas; (4) focusing research on improving the health of vulnerable populations; (5) improving child health data and collection systems at the national level; (6) developing better community health monitoring for children; (7) building and supporting research networks and a consortium of research users; and (8) developing a coordinated interagency federal effort to advance this agenda and to provide accountability for its completion. CONCLUSION: The proposed research agenda should be a national priority so that all Americans can be assured that children are receiving the best quality of care that the United States can provide.
PMCID: PMC1070300  PMID: 9776945
15.  Responding to Health Information and Training Needs of Individuals with Disabilities 
The role of a medical librarian includes guiding consumers to search for information related to specific health needs and interpret information for personal use. Little is known about barriers to accessing health information and clinical services for those with cognitive and physical disabilities. The purpose of this paper is to describe a statewide needs assessment of the health information and services needs of individuals with disabilities and their caregivers.
Data from the needs assessment conducted by the Health Services Training Project of more than 1,000 respondents indicate unmet needs for outreach to increase effective use of library and information resources. Fewer consumers and their caregivers utilized the Internet to search for health information as compared to clinical service providers and students in health professions. A majority of consumers reported difficulty obtaining and understanding online health information. Service providers and students shared concerns about information quality. Consumers and caregivers expressed highest levels of trust in information provided by service providers, nonprofit health agencies, reference books, and libraries.
doi:10.1080/02763860903543130
PMCID: PMC2922770  PMID: 20730027
Caregivers; cognitive disabilities; health care providers; online health information; physical disabilities; surveys
16.  A psychometric evaluation of the PedsQL™ Family Impact Module in parents of children with sickle cell disease 
Background
Caring for a child with a chronic condition, such as sickle cell disease, can have a significant impact on parents and families. In order to provide comprehensive care and support to these families, psychometrically sound instruments are needed as an initial step in measuring the impact of chronic diseases on parents and families. We sought to evaluate the psychometric properties of the PedsQL™ Family Impact Module in populations of children with and without sickle cell disease. In addition, we sought to determine the correlation between parent's well being and their proxy report of their child's health-related quality of life (HRQL).
Methods
We conducted a cross-sectional study of parents of children with and without sickle cell disease who presented to an urban hospital-based sickle cell disease clinic and an urban primary care clinic. We assessed the HRQL and family functioning of both groups of parents utilizing the PedsQL™ Family Impact Module. The reliability, validity and factor structure of the instrument were determined and scores from the instrument were correlated with scores from parent-proxy report of their child's HRQL using the PedsQL™ 4.0 Generic Core Scales.
Results
Parents of 170 children completed the module (97 parents of children with sickle cell disease and 73 parents of children without sickle cell disease). The Family Impact Module had high ceiling effects but was reliable (Cronbach's alpha > 0.80 in all scales). The empirical factor structure was generally consistent with the theoretical factor structure and supported construct validity. The Family Impact Module discriminated between parents of children with severe sickle cell disease from parents of children with mild disease or no disease in the areas of communication and worry. There were no significant differences across any of the subscales between parents of children with mild sickle cell disease and those with no disease. Parents with higher scores, representing better HRQL and family functioning, generally reported higher HRQL scores for their children.
Conclusion
The PedsQL™ Family Impact module was reliable, however it displayed large ceiling effects and did not discriminate well between parents of children with and without sickle cell disease. Future research to evaluate the psychometric properties of the Family Impact Module for parents of healthy children may be helpful.
doi:10.1186/1477-7525-7-32
PMCID: PMC2678996  PMID: 19371442
17.  Homeless families and their children's health problems. A Utah urban experience. 
Western Journal of Medicine  1993;158(1):30-35.
Descriptive information was obtained about homeless families in the Intermountain West and their children's health care needs were defined to help professionals develop programs tailored to meet the unique needs of this population. We collected data during the well-child visits of 306 children in 161 families living at the Travelers Aid Society family shelter. The results reveal 2 types of homeless families, episodic and long term. Each requires different levels of assistance. This study's profile of mobile, predominantly white, 2-parent families with few children (mean of 1.2) differs considerably from that of studies conducted on the East and West coasts. The families' nomadic life-style (73.1% came from 32 states other than Utah) present important public health issues, especially because of the recent resurgence of tuberculosis and declining levels of childhood immunizations. The children's health problems were similar to those reported nationally: delayed immunizations, dental decay, anemia, and impaired vision.
PMCID: PMC1021933  PMID: 8470381
18.  Air travel and children’s health issues 
Paediatrics & Child Health  2007;12(1):45-50.
With more children travelling by air, health care professionals should become more familiar with some of the unique health issues associated with air travel. A thorough literature search involving a number of databases (1966 to 2006) revealed very few evidence-based papers on air travel and children. Many of the existing recommendations are based on descriptive evidence and expert opinion. The present statement will help physicians to inform families about the health-related issues concerning air travel and children, including otitis media, cardiopulmonary disorders, allergies, diabetes, infection and injury prevention. An accompanying document (Information for Parents and Caregivers) is also available in this issue of Paediatrics & Child Health (pages 51-52) to help answer common questions from parents.
PMCID: PMC2528660  PMID: 19030341
Airline; Air travel; Barotitis; Child safety; Hypoxia
19.  A Consensus Action Agenda for Achieving the National Health Information Infrastructure 
Background: Improving the safety, quality, and efficiency of health care will require immediate and ubiquitous access to complete patient information and decision support provided through a National Health Information Infrastructure (NHII).
Methods: To help define the action steps needed to achieve an NHII, the U.S. Department of Health and Human Services sponsored a national consensus conference in July 2003.
Results: Attendees favored a public–private coordination group to guide NHII activities, provide education, share resources, and monitor relevant metrics to mark progress. They identified financial incentives, health information standards, and overcoming a few important legal obstacles as key NHII enablers. Community and regional implementation projects, including consumer access to a personal health record, were seen as necessary to demonstrate comprehensive functional systems that can serve as models for the entire nation. Finally, the participants identified the need for increased funding for research on the impact of health information technology on patient safety and quality of care. Individuals, organizations, and federal agencies are using these consensus recommendations to guide NHII efforts.
doi:10.1197/jamia.M1616
PMCID: PMC436084  PMID: 15187075
20.  Kids’ Views on Violence in the Media 
Introduction
Kids’ Take on Media is a national study of Canadian children’s and adolescents’ experience with media.
Method
The survey was designed and conducted by ERIN Research in spring, 2003 for the Canadian Teachers’ Federation (CTF) following consultation with the Media Awareness Network (MNet), and with funding from the National Crime Prevention Centre, Justice Canada.
Results
While there is an extensive literature on the links between media violence and behaviour, this survey asks kids directly what they think: How attractive is media violence? Have they seen other kids imitate violent acts that they saw in the media? Do kids see media violence as harmful?
Conclusion
Parental supervision of media use and family discussion of media issues have significant effects on kids’ opinion regarding media violence. When families and significant others provide a framework for thinking about violence in media, kids are better equipped to assess an negative impact.
PMCID: PMC2533815  PMID: 19030147
mass; media; violence; television; child; adolescent
21.  Online Information about Cancer Clinical Trials: Evaluating the Web Sites of Comprehensive Cancer Centers 
The objective of this study was to examine the information provided on comprehensive cancer centers’ Web sites regarding clinical trials. Thirty-nine Web sites were visually inspected for four categories of variables: navigation to the clinical trial information, search functionality provided to the visitor, information content provided about trials, and the reading level of the information provided. Results indicated that for those Web sites that provided information about clinical trials, the content was often limited and trial descriptions were written at a college reading level. This study suggests that these Web sites are not yet adequately designed to serve as a successful aid for increased trial accrual. The design of future online clinical trial information should be guided by data from consumer health informatics research.
PMCID: PMC1480289  PMID: 14728217
22.  Parenting Through Genetic Uncertainty: Themes in the Disclosure of Breast Cancer Risk Information to Children 
Aim: Among mothers undergoing BRCA1/2 testing and their spouses/partners, this study sought to examine decision support needs and motivations for family communication of genetic risk information to asymptomatic children. Methods: This study gathered data from 213 tested mothers and 104 of their untested parenting partners 1 month after maternal receipt of genetic test results and upon making a decision about communicating genetic information to their child (ages 8–21 years). Data include parents' perceived needs for family communication decision support, decision motivations, and parent-child communication. Results: Parents reported high decision support needs (e.g., educational materials, professional counseling, peer assistance). Motivations for disclosure to children among mothers and partners focused on promoting the parent-child bond and maintaining family health (55.3% and 75%, respectively) and promoting positive child affect (44.7% and 25.5%, respectively). Motivations for nondisclosure to children among mothers and partners focused on the lack of appropriateness (69.6% and 51.3%, respectively) and relative importance of genetic test results (30.4% and 48.7%, respectively). Significant discrepancies in parental motivation for family communication were observed. Decision support needs were highest among disclosing mothers with affect-related motivations [t (129)=2.47; p=0.01]. Parent-child communication was poorest among nondisclosing mothers concerned about the appropriateness of genetic information for their child [t (77)=−3.29; p=.002]. Conclusions: Parents receiving information about hereditary cancer predisposition have unmet needs when making decisions about disclosing genetic risk information to their asymptomatic children. These data can guide the development of cancer risk communication decision support interventions for parents undergoing such testing.
doi:10.1089/gtmb.2011.0154
PMCID: PMC3354582  PMID: 22085394
23.  Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users 
Background
Data stored in personally controlled health records (PCHRs) may hold value for clinicians and public health entities, if patients and their families will share them. We sought to characterize consumer willingness and unwillingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue.
Methods
Cross-sectional 2009 Web survey of repeat PCHR users who were patients over 18 years old or parents of patients, to assess willingness to share their PCHR data with an-out-of-hospital provider to support care, and the state/local public health authority to support monitoring; the odds of reticence to share PCHR information about ten exemplary health topics were estimated using a repeated measures approach.
Results
Of 261 respondents (56% response rate), more reported they would share all information with the state/local public health authority (63.3%) than with an out-of-hospital provider (54.1%) (OR 1.5, 95% CI 1.1, 1.9; p = .005); few would not share any information with these parties (respectively, 7.9% and 5.2%). For public health sharing, reticence was higher for most topics compared to contagious illness (ORs 4.9 to 1.4, all p-values < .05), and reflected concern about anonymity (47.2%), government insensitivity (41.5%), discrimination (24%). For provider sharing, reticence was higher for all topics compared to contagious illness (ORs 6.3 to 1.5, all p-values < .05), and reflected concern for relevance (52%), disclosure to insurance (47.6%) and/or family (20.5%).
Conclusions
Pediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious. Robust trust models for PCHR sharing are needed.
doi:10.1186/1472-6947-12-39
PMCID: PMC3403895  PMID: 22616619
24.  Validity and reliability of a structured interview for early detection and risk assessment of parenting and developmental problems in young children: a cross-sectional study 
BMC Pediatrics  2012;12:71.
Background
Preventive child health care is well suited for the early detection of parenting and developmental problems. However, as far as the younger age group is concerned, there are no validated early detection instruments which cover both the child and its environment. Therefore, we have developed a broad-scope structured interview which assesses parents’ concerns and their need for support, using both the parental perspective and the experience of the child health care nurse: the Structured Problem Analysis of Raising Kids (SPARK). This study reports the psychometric characteristics of the SPARK.
Method
A cross-sectional study of 2012 18-month-old children, living in Zeeland, a province of the Netherlands. Inter-rater reliability was assessed in 67 children. Convergent validity was assessed by comparing SPARK-domains with domains in self-report questionnaires on child development and parenting stress. Discriminative validity was assessed by comparing different outcomes of the SPARK between groups with different levels of socio-economic status and by performing an extreme-groups comparison. The user experience of both parents and nurses was assessed with the aid of an online survey.
Results
The response rate was 92.1% for the SPARK. Self-report questionnaires were returned in the case of 66.9% of the remaining 1721 children. There was selective non-reporting: 33.1% of the questionnaires were not returned, covering 65.2% of the children with a high-risk label according to the SPARK (p < 0.001). Inter-rater reliability was good to excellent with intraclass correlations between 0.85 and 1.0 for physical topics; between 0.61 and 0.8 for social-emotional topics and 0.92 for the overall risk assessment. Convergent validity was unexpectedly low (all correlations ≤0.3) although the pattern was as expected. Discriminative validity was good. Users were satisfied with the SPARK and identified some topics for improvement.
Conclusion
The SPARK discriminates between children with a high, increased and low risk of parenting and developmental problems. It does so in a reliable way, but more research is needed on aspects of validity and in other populations.
doi:10.1186/1471-2431-12-71
PMCID: PMC3465192  PMID: 22697218
25.  ELECTRONIC HEALTH IN GHANA: CURRENT STATUS AND FUTURE PROSPECTS 
The health-care system in Ghana is similar to those in other developing countries and access to health services for remote communities is extremely limited. In July, 2010, the Government of Ghana launched the national e health strategy. A number of international organizations have initiated various pilot projects, including disseminating and collecting data, education initiatives and telemedicine. In addition, several institutions and organizations are dedicated to the promotion of e-health and a range of Web-based health consultancy services have begun. The main objective of this study is to provide an overview of eHealth activities in Ghana. It was a daunting task, not least because of the need to gather information on eHealth projects and initiatives in Ghana, as there is no existing repository of such information. Through literature search in Africa journals online, Hinari, Medline, Google.com, Journal of Telemedicine and e-Health, Journal of Telemedicine and Telecare, Journal of Medical Internet Research and Interaction with eHealth experts, followed up with some of the authors' for directions to other projects, and following the references in some articles. A total of twenty-two (22) pilot projects have been identified in Ghana. Mobile devices in use range from PDAs to simple phones and smart phones. The key findings of this research are that there are about 22 eHealth project at various stages of implementation in Ghana. Some of these projects have wind up and others are still being implemented. Mobile devices in use range from PDAs to simple mobile phones and smart phones. Most of the projects have been donor initiated. Data collection started in March 2010 to June 2013. Although eHealth seems to have a limited role in Ghana at present, there is growing interest in the opportunities it may offer in terms of improving the delivery and access to services, especially in remote locations. Recommendations for further research are provided.
doi:10.5210/ojphi.v5i3.4943
PMCID: PMC3959911  PMID: 24678382
eHealth; Health; Ghana; Developing Countries; Information and Communications Technology

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