European consumers are faced with a myriad of food related risk and benefit information and it is regularly left up to the consumer to interpret these, often conflicting, pieces of information as a coherent message. This conflict is especially apparent in times of food crises and can have major public health implications. Scientific results and risk assessments cannot always be easily communicated into simple guidelines and advice that non-scientists like the public or the media can easily understand especially when there is conflicting, uncertain or complex information about a particular food or aspects thereof. The need for improved strategies and tools for communication about food risks and benefits is therefore paramount. The FoodRisC project ("Food Risk Communication - Perceptions and communication of food risks/benefits across Europe: development of effective communication strategies") aims to address this issue. The FoodRisC project will examine consumer perceptions and investigate how people acquire and use information in food domains in order to develop targeted strategies for food communication across Europe.
This project consists of 6 research work packages which, using qualitative and quantitative methodologies, are focused on development of a framework for investigating food risk/benefit issues across Europe, exploration of the role of new and traditional media in food communication and testing of the framework in order to develop evidence based communication strategies and tools. The main outcome of the FoodRisC project will be a toolkit to enable coherent communication of food risk/benefit messages in Europe. The toolkit will integrate theoretical models and new measurement paradigms as well as building on social marketing approaches around consumer segmentation. Use of the toolkit and guides will assist policy makers, food authorities and other end users in developing common approaches to communicating coherent messages to consumers in Europe.
The FoodRisC project offers a unique approach to the investigation of food risk/benefit communication. The effective spread of food risk/benefit information will assist initiatives aimed at reducing the burden of food-related illness and disease, reducing the economic impact of food crises and ensuring that confidence in safe and nutritious food is fostered and maintained in Europe.
Digital information technology can facilitate informed decision making by individuals regarding their personal health care. The digital divide separates those who do and those who do not have access to or otherwise make use of digital information. To close the digital divide, health care communications research must address a fundamental issue, the consumer vocabulary problem: consumers of health care, at least those who are laypersons, are not always familiar with the professional vocabulary and concepts used by providers of health care and by providers of health care information, and, conversely, health care and health care information providers are not always familiar with the vocabulary and concepts used by consumers. One way to address this problem is to develop a consumer entry vocabulary for health care communications.
To evaluate the potential of controlled vocabulary resources for supporting the development of consumer entry vocabulary for diabetes.
We used folk medical terms from the Dictionary of American Regional English project to create exended versions of 3 controlled vocabulary resources: the Unified Medical Language System Metathesaurus, the Eurodicautom of the European Commission's Translation Service, and the European Commission Glossary of popular and technical medical terms. We extracted consumer terms from consumer-authored materials, and physician terms from physician-authored materials. We used our extended versions of the vocabulary resources to link diabetes-related terms used by health care consumers to synonymous, nearly-synonymous, or closely-related terms used by family physicians. We also examined whether retrieval of diabetes-related World Wide Web information sites maintained by nonprofit health care professional organizations, academic organizations, or governmental organizations can be improved by substituting a physician term for its related consumer term in the query.
The Dictionary of American Regional English extension of the Metathesaurus provided coverage, either direct or indirect, of approximately 23% of the natural language consumer-term-physician-term pairs. The Dictionary of American Regional English extension of the Eurodicautom provided coverage for 16% of the term pairs. Both the Metathesaurus and the Eurodicautom indirectly related more terms than they directly related. A high percentage of covered term pairs, with more indirectly covered pairs than directly covered pairs, might be one way to make the most out of expensive controlled vocabulary resources. We compared retrieval of diabetes-related Web information sites using the physician terms to retrieval using related consumer terms We based the comparison on retrieval of sites maintained by non-profit healthcare professional organizations, academic organizations, or governmental organizations. The number of such sites in the first 20 results from a search was increased by substituting a physician term for its related consumer term in the query. This suggests that the Dictionary of American Regional English extensions of the Metathesaurus and Eurodicautom may be used to provide useful links from natural language consumer terms to natural language physician terms.
The Dictionary of American Regional English extensions of the Metathesaurus and Eurodicautom should be investigated further for support of consumer entry vocabulary for diabetes.
Communication barriers; vocabulary, controlled; public health
Prescription drug advertising to consumers (DTCA) has remained controversial since regulations were liberalized by the Food and Drug Administration in 1997. This paper reviews empirical evidence addressing the claims made in the policy debate for and against DTCA. We find that there are some benefits from DTCA, but significant risks are evident as well, magnified by the prominence of DTCA among population-level health communications. To minimize potential harm and maximize the benefits of DTCA for population health, we propose improving the quality and quantity of information to (1) enable consumers to better self-identify whether treatment is indicated, (2) enable consumers to more realistically appraise the benefits, and (3) enable consumers to better attend to the risks associated with prescription drugs.
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.
consumer health information; internet; contextualization of information; personalization
In the past two decades, consumer health libraries have proliferated in response to the changing health care environment and consumer demand. While this growth of consumer health resources and services has been extensively described in the literature, there is little documentation about the impact and value of providing consumer health information. This paper explores the issues of impact and value as examined in a retrospective study of consumers who received health information from the Delaware Academy of Medicine's Consumer Health Library during 1995. In this study, 270 adults were mailed a questionnaire that focused on whether the information influenced decisions, actions, anxiety levels, and patient-provider communication. The questionnaire also addressed the value of such library service in terms of likelihood of repeat use, recommendation to others, and willingness to pay. The results, based on a return rate of 86.7%, identified effects of library-supplied consumer health information that extend beyond the anticipated acquisition of knowledge to specific actions and effects on anxiety. The value of consumer health library information service was shown by the extremely high percentage of probable repeat use and recommendation to others, the willingness of 83.8% of the respondents to pay for such service, and the copious comments volunteered by the respondents.
Laypersons (“consumers”) often have difficulty finding, understanding, and acting on health information due to gaps in their domain knowledge. Ideally, consumer health vocabularies (CHVs) would reflect the different ways consumers express and think about health topics, helping to bridge this vocabulary gap. However, despite the recent research on mismatches between consumer and professional language (e.g., lexical, semantic, and explanatory), there have been few systematic efforts to develop and evaluate CHVs. This paper presents the point of view that CHV development is practical and necessary for extending research on informatics-based tools to facilitate consumer health information seeking, retrieval, and understanding. In support of the view, we briefly describe a distributed, bottom-up approach for (1) exploring the relationship between common consumer health expressions and professional concepts and (2) developing an open-access, preliminary (draft) “first-generation” CHV. While recognizing the limitations of the approach (e.g., not addressing psychosocial and cultural factors), we suggest that such exploratory research and development will yield insights into the nature of consumer health expressions and assist developers in creating tools and applications to support consumer health information seeking.
Considerable epidemiologic evidence links consuming lower glycemic index (GI) diets with good health, particularly upon aging. The GI is a kinetic parameter which reflects the ability of carbohydrate (CHO)-contained in consumed foods to raise blood glucose in vivo. Newer nutritional, clinical, and experimental data link intake of lower dietary GI foods to favorable outcomes of chronic diseases, and compel further examination of the record. Based upon the new information there are 2 specific questions: 1) should the GI concept be promoted as a way to prolong health, and 2) should food labels contain GI information? Further, what are the remaining concerns about methodological issues and consistency of epidemiological data and clinical trials that need to be resolved in order to exploit the benefits of consuming lower GI diets? These issues are addressed in this review.
An informed choice about health-related direct-to-consumer genetic testing (DTCGT) requires knowledge of potential benefits, risks, and limitations. To understand the information that potential consumers of DTCGT services are exposed to on company websites, we conducted a content analysis of 23 health-related DTCGT websites. Results revealed that benefit statements outweighed risk and limitation statements 6 to 1. The most frequently described benefits were 1) disease prevention, 2) consumer education, 3) personalized medical recommendations, and 4) the ability to make health decisions. Thirty-five percent of websites also presented at least one risk of testing. Seventy-eight percent of websites mentioned at least one limitation of testing. Based on this information, potential consumers might get an inaccurate picture of genetic testing which could impact their ability to make an informed decision. Practices that enhance the presentation of balanced information on DTCGT company websites should be encouraged.
Direct-to-consumer; genetic testing; Internet; informed choice; persuasion; content analysis
Prevention of postnatal mental disorders in women is an important component of comprehensive health service delivery because of the substantial potential benefits for population health. However, diverse approaches to prevention of postnatal depression have had limited success, possibly because anxiety and adjustment disorders are also problematic, mental health problems are multifactorially determined, and because relationships amongst psychosocial risk factors are complex and difficult to modify. The aim of this paper is to describe the development of a novel psycho-educational intervention to prevent postnatal mental disorders in mothers of firstborn infants.
Data from a variety of sources were synthesised: a literature review summarised epidemiological evidence about neglected modifiable risk factors; clinical research evidence identified successful psychosocial treatments for postnatal mental health problems; consultations with clinicians, health professionals, policy makers and consumers informed the proposed program and psychological and health promotion theories underpinned the proposed mechanisms of effect. The intervention was pilot-tested with small groups of mothers and fathers and their first newborn infants.
What Were We Thinking! is a psycho-educational intervention, designed for universal implementation, that addresses heightened learning needs of parents of first newborns. It re-conceptualises mental health problems in mothers of infants as reflecting unmet needs for adaptations in the intimate partner relationship after the birth of a baby, and skills to promote settled infant behaviour. It addresses these two risk factors in half-day seminars, facilitated by trained maternal and child health nurses using non-psychiatric language, in groups of up to five couples and their four-week old infants in primary care. It is designed to promote confidence and reduce mental disorders by providing skills in sustainable sleep and settling strategies, and the re-negotiation of the unpaid household workload in non-confrontational ways. Materials include a Facilitators' Handbook, creatively designed worksheets for use in seminars, and a book for couples to take home for reference. A website provides an alternative means of access to the intervention.
What Were We Thinking! is a postnatal mental health intervention which has the potential to contribute to psychologically-informed routine primary postnatal health care and prevent common mental disorders in women.
Evidence-based information is a precondition for informed decision-making and participation in health. There are several recommendations and definitions available on the generation and assessment of so called evidence-based health information for patients and consumers (EBHI). They stress the importance of objectively informing people about benefits and harms and any uncertainties in health-related procedures. There are also studies on the comprehensibility, relevance and user-friendliness of these informational materials. But to date there has been little research on the perceptions and cognitive reactions of users or lay people towards EBHI. The aim of our study is to define the spectrum of consumers’ reaction patterns to written EBHI in order to gain a deeper understanding of their comprehension and assumptions, as well as their informational needs and expectations.
This study is based on an external user evaluation of EBHI produced by the German Institute for Quality and Efficiency in Health Care (IQWiG), commissioned by the IQWiG. The EBHI were examined within guided group discussions, carried out with lay people. The test readers’ first impressions and their appraisal of the informational content, presentation, structure, comprehensibility and effect were gathered. Then a qualitative text analysis of 25 discussion transcripts involving 94 test readers was performed.
Based on the qualitative text analysis a framework for reaction patterns was developed, comprising eight main categories: (i) interest, (ii) satisfaction, (iii) reassurance and trust, (iv) activation, (v) disinterest, (vi) dissatisfaction and disappointment, (vii) anxiety and worry, (viii) doubt.
Many lay people are unfamiliar with core characteristics of this special information type. Two particularly critical issues are the description of insufficient evidence and the attendant absence of clear-cut recommendations. Further research is needed to examine strategies to explain the specific character of EBHI so as to minimize unintended or adverse reaction patterns. The presented framework describes the spectrum of users’ reaction patterns to EBHI. It may support existing best practice models for editing EBHI.
The recent flood of information about new gene variants associated with chronic disease risk from genome-wide association studies has understandably led to enthusiasm that genetic discoveries could reduce disease burdens and increase the availability of direct-to-consumer tests offering risk information. However, we suggest caution: if it is to be any benefit to health, genetic risk information needs to prompt individuals to pursue risk-reduction behaviors, yet early evidence suggests that genetic risk may not be an effective motivator of behavior change. It is not clear how genetic information will inform risk-based behavioral intervention, or what harms might occur. Research is needed that examines the behavioral consequences of genetic risk knowledge in the context of other motivators and social conditions, as well as research that determines the subgroups of people most likely to be motivated, in order to inform policy decisions about emerging genetic susceptibility tests. Without such research, it will not be possible to determine the appropriate health care uses for such tests, the impact on health care resources from consumer-initiated testing, or the criteria for truthful advertising of direct-to-consumer tests.
The right to information is a fundamental consumer value. Following the advent of health warnings, the tobacco industry has repeatedly asserted that smokers are fully informed of the risks they take, while evidence demonstrates widespread superficial levels of awareness and understanding. There remains much that tobacco companies could do to fulfil their responsibilities to inform smokers. We explore issues involved in the meaning of "adequately informed" smoking and discuss some of the key policy and regulatory implications. We use the idea of a smoker licensing scheme—under which it would be illegal to sell to smokers who had not demonstrated an adequate level of awareness—as a device to explore some of these issues. We also explore some of the difficulties that addiction poses for the notion that smokers might ever voluntarily assume the risks of smoking.
Women who participate in BRCA1/2 cancer genetic counseling do so for a variety of reasons, including learning quantitative risk information about their chances of developing hereditary breast-ovarian cancer at some point during their lifetimes. For these women, obtaining pre-test and disclosure genetic counseling with a professional affords them numerous potential benefits, including adequate preparation for, and accurate interpretation of, their test results. In consequence, women commonly report being highly satisfied with their cancer genetic counseling experience, even if the information learned through testing suggests they are at increased cancer risk. This occurrence raises an interesting question, namely what are the psychological aspects of satisfaction with genetic counseling for hereditary breast-ovarian cancer in women? To answer this question, we administered the Genetic Counseling Satisfaction Scale (GCSS) to a convenience sample of 61 women participating in BRCA1/2 pre-test genetic counseling, and re-administered the GCSS to approximately one-third of these women at disclosure. Available psychological data included personality, distress, and family functioning. In bivariate analyses, optimism and family functioning were positively associated with pre-test satisfaction. With respect to satisfaction at disclosure, general and cancer-specific distress were negatively associated with satisfaction. Our findings suggest that psychological aspects of satisfaction with cancer genetic counseling vary, with individual differences and family functioning playing a role at pre-test, and distress playing a role at disclosure. The implications for future research and clinical practice are discussed.
hereditary breast and ovarian cancer; genetic counseling; genetic testing; satisfaction; psychology
Genetic testing offered by direct-to-consumer companies—herein referred to as “predictive genomic testing”—has come under federal scrutiny. Critics claim testing yields uninterpretable and potentially harmful information. Supporters assert individuals have a right to this information, which could catalyze preventive health actions. Despite contentions that predictive genomic testing is a tool of primary disease prevention, little discussion has focused on its use with children. This partly stems from concerns expressed in existing professional guidelines about the potential for psychological and behavioral harm to children engendered by predictive genetic tests for Mendelian diseases. Conducting research to understand the actual benefits and harms is important for policy development and practice guidance and can be ethically justified within the pediatric regulatory framework of research that offers a prospect of direct benefit. Child health psychologists are well poised to contribute to this research effort, and promote the translation of genomic discoveries to improve pediatric medicine.
children; genetic testing; psychosocial risks/benefits; research ethics
To determine whether consumer involvement
would help to solve some of the ethical problems associated with
research into thrombolysis for acute ischaemic stroke, with its
inherent risk of fatal intracranial haemorrhage.
Quantitative and qualitative research.
Setting and participants
Consultation phase: three
meetings were held to discuss the planned research, and participants
completed a questionnaire. Qualitative work: focus group meetings
explored the issues raised during the consultation phase. Design of
information leaflets for patients and relatives: trial materials were
drafted during the consultation phase and revised in the light of
feedback from the focus group meetings and review by patients and
carers on a stroke rehabilitation unit.
54 people attended the consultation
meetings. Four (9%) participants considered the risks of thrombolysis
too great, but most (89%) were prepared to accept the treatment in a
clinical trial. Nearly all would accept treatment if it was shown to be
effective. Most (85%) would give their consent to enter the planned
trial. The focus group meetings and feedback from patients and carers
led to significant changes in the information leaflets. The revised
trial materials were considered ethical by a national multicentre
research ethics committee.
Consumers generally supported a planned
trial, and their involvement helped to refine trial consent procedures
and led to an ethically acceptable trial design.
What is already known on this topicObtaining informed consent for emergency stroke treatment is difficult
and presents many ethical dilemmasConsumer involvement in trial design has been successful in some
medical specialties but not previously reported in stroke researchWhat this study addsInvolvement of consumers in the design of trials on stroke is
valuableComments from people who have not yet had a stroke and from carers of
those who have can enable substantial improvement of trial information
leafletsConsumers support different consent approaches depending on the
clinical state of the patientConsumer involvement can be a very important part of the development of
new randomised controlled trials
Electronic health tools provide little value if the intended users lack the skills to effectively engage them. With nearly half the adult population in the United States and Canada having literacy levels below what is needed to fully engage in an information-rich society, the implications for using information technology to promote health and aid in health care, or for eHealth, are considerable. Engaging with eHealth requires a skill set, or literacy, of its own. The concept of eHealth literacy is introduced and defined as the ability to seek, find, understand, and appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem. In this paper, a model of eHealth literacy is introduced, comprised of multiple literacy types, including an outline of a set of fundamental skills consumers require to derive direct benefits from eHealth. A profile of each literacy type with examples of the problems patient-clients might present is provided along with a resource list to aid health practitioners in supporting literacy improvement with their patient-clients across each domain. Facets of the model are illustrated through a set of clinical cases to demonstrate how health practitioners can address eHealth literacy issues in clinical or public health practice. Potential future applications of the model are discussed.
Internet; literacy; public health; health care; electronic health information; evaluation of electronic resources; electronics; telecommunications; consumer health information; patient education; educational status; computer network
This paper defines risk and its component elements and describes where clinical practice may be starting from in terms of what is reported in the literature about understanding risks and the information requirements of consumers. It notes briefly how theoretical models in the literature contribute to our understanding by providing a basis from which to summarise current evidence about the effects of healthcare interventions which address risks and risk behaviour. The situations or types of interventions in which risk related interventions are most effective are described, but a significant caveat is noted about the types of outcomes which have been reported in the literature and which are most appropriate to evaluate. The effects of "framing" variations in the information given to consumers and the ethical dilemmas these raise for a debate about "informed choice" in healthcare programmes are discussed. In response to both the practical and ethical dilemmas that arise from the current evidence, some of the areas where attention should be focused in the future are outlined so that both health gain and informed choice might be achieved. These include the use of decision aids, although their implementation is not widespread at present. Lessons from the current literature on how further progress can be made towards improved communication, discussion between professionals and consumers, and enhancing informed choice are discussed.
Key Words: patient preference; risk; informed choice; decision making; patient-caregiver communication
This paper addresses the challenges and opportunities that face the public in negotiating the health care system (both medicine and public health) in the 21st century. It addresses three issues: how consumers exercise choice, with special attention to the choice of health care coverage; how patients and communities interact with clinicians and public health professionals; and whether and how the public's “voice” is heard as health policy decisions, at the societal and institutional levels, are made. With respect to each of these issues, the paper describes the current status of public influence and articulates a vision for the future. These three related visions are (1) that empowered, informed, supported consumers make decisions about health plans, clinicians, treatments, and their own behavior; (2) that clinicians and public health professionals, working as partners with patients and communities, are in a position to “standardize the customization of care” so that all aspects of care are tailored to the needs of the individual, family, or community in question and social, economic, and cultural factors are taken into account in the day-to-day practice of medicine and public health; and (3) that the ability and willingness of the public to negotiate and shape the health care environment is supported by an independent infrastructure that permits enhanced public involvement in health policy making and governance. The paper identifies key elements of this vision, discusses challenges to pursuing and achieving each vision, and identifies opportunities that may support the pursuit of the vision.
To evaluate what psychological and behavioral factors predict who is likely to seek SNP-based genetic test for multiple common health conditions where feedback can be used to motivate primary prevention.
Adults aged 25 to 40, who were enrolled in a large managed care organization were surveyed. Those eligible could log on to a secure study Web site to review information about the risks and benefits of a SNP-based genetic test and request free testing. Two primary outcomes are addressed: Accessing the Web (yes, no) and deciding to be tested (completed a blood draw at the clinic)
Those considering genetic susceptibility testing did hold genetically deterministic beliefs (0.42 on scale of 0-behavior to 1-genetic), but believed genetic information to be valuable and were confident they could understand such information. Individuals who believed it important to learn about genetics (OR=1.28), were confident they could understand genetics (OR=1.26), and reported the most health habits to change (OR=1.39) were most likely to get tested.
Physician-patient interactions could benefit if physicians develop “net friendly” strategies to capitalize on patients’ interest in online genetics information and leverage the interaction as a teachable moment to encourage family health history assessment and improved health behaviors.
personalized genomics; risk assessment; internet; psychosocial predictors
A rapid growth in the socioeconomic status of Koreans has triggered an unprecedented explosion of health information for the general population. Despite its obvious benefits, this increase in information could also result in potentially harmful effects for both consumers and professionals who do not use it appropriately. Thus, this study was conducted to evaluate the quality and accuracy of health information on erectile dysfunction from 10 nationwide daily newspapers.
Materials and Methods
This study analyzed health information from 10 nationwide daily newspapers in Korea from January 2011 through December 2011. We reviewed the health information for quality by using evidence-based medicine tools and evaluated the accuracy of the information provided. Articles that simply summarized scientific congresses or journal articles and that did not include direct quotations were excluded, as were advertisements.
A total of 47 articles were gathered. Among them, 27 (57.4%) contained inaccurate or misleading statements on the basis of an evidence-based medicine evaluation. These statements included using inappropriate surrogate outcomes as clinical endpoints (three cases, 6.4%), extrapolating nonhuman results to humans (two cases, 4.3%), exaggerating the significance of results (eight cases, 17.0%), and using incorrect words (14 cases, 29.8%). The rate of error was higher in the information from Korean sources than in that from international sources (22 cases vs. 5 cases).
Approximately 57% of all articles on erectile dysfunction from 10 nationwide daily newspapers were found to contain inaccuracies.
Erectile dysfunction; Evidence-based medicine; Newspapers
Appropriate patient information materials may support the consumer’s decision to attend or not to attend colorectal cancer (CRC) screening tests (fecal occult blood test and screening colonoscopy). The aim of this study was to develop a list of criteria to assess whether written health information materials on CRC screening provide balanced, unbiased, quantified, understandable, and evidence-based health information (EBHI) about CRC and CRC screening.
The list of criteria was developed based on recommendations and assessment tools for health information in the following steps: (1) Systematic literature search in 13 electronic databases (search period: 2000–2010) and completed by an Internet search (2) Extraction of identified criteria (3) Grouping of criteria into categories and domains (4) Compilation of a manual of adequate answers derived from systematic reviews and S3 guidelines (5) Review by external experts (6) Modification (7) Final discussion with external experts.
Thirty-one publications on health information tools and recommendations were identified. The final list of criteria includes a total of 230 single criteria in three generic domains (formal issues, presentation and understandability, and neutrality and balance) and one CRC-specific domain. A multi-dimensional rating approach was used whenever appropriate (e.g., rating for the presence, correctness, presentation and level of evidence of information). Free text input was allowed to ensure the transparency of assessment. The answer manual proved to be essential to the rating process. Quantitative analyses can be made depending on the level and dimensions of criteria.
This comprehensive list of criteria clearly has a wider range of evaluation than previous assessment tools. It is not intended as a final quality assessment tool, but as a first step toward thorough evaluation of specific information materials for their adherence to EBHI requirements. This criteria list may also be used to revise leaflets and to develop evidence-based health information on CRC screening. After adjustment for different procedure-specific criteria, the list of criteria can also be applied to other cancer screening procedures.
Screening; Early diagnosis; Colorectal cancer; Bowel cancer; Informed decision-making; Informed choice; Evidence-based health information; Evidence-based patient information; Risk communication; Decision aids
Consumers face barriers when seeking health information on the Internet. A
Personalized Health Information Retrieval System (PHIRS) is proposed
to recommend health information for consumers. The system consists
of four modules: (1) User modeling module captures user’s preference
and health interests; (2) Automatic quality filtering module identifies
high quality health information; (3) Automatic text difficulty
rating module classifies health information into professional or patient
educational materials; and (4) User profile matching module tailors
health information for individuals. The initial results show that PHIRS
could assist consumers with simple search strategies.
An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB) - a contributory benefits social program aimed at informal P/EOL caregivers - operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model.
As part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework.
Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants.
This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the potential it holds for serving as one public health response to caregiver burden that forms part of a healthy public policy that addresses the determinants of this burden.
The AMIA 2003 Spring Congress entitled “Bridging the Digital Divide: Informatics and Vulnerable Populations” convened 178 experts including medical informaticians, health care professionals, government leaders, policy makers, researchers, health care industry leaders, consumer advocates, and others specializing in health care provision to underserved populations. The primary objective of this working congress was to develop a framework for a national agenda in information and communication technology to enhance the health and health care of underserved populations. Discussions during four tracks addressed issues and trends in information and communication technologies for underserved populations, strategies learned from successful programs, evaluation methodologies for measuring the impact of informatics, and dissemination of information for replication of successful programs. Each track addressed current status, ideal state, barriers, strategies, and recommendations. Recommendations of the breakout sessions were summarized under the overarching themes of Policy, Funding, Research, and Education and Training. The general recommendations emphasized four key themes: revision in payment and reimbursement policies, integration of health care standards, partnerships as the key to success, and broad dissemination of findings including specific feedback to target populations and other key stakeholders.
Genetic tests have traditionally been offered by health professionals. However, genomic tests have been available direct to the consumer for the last decade, increasingly via the Internet. The aim of this systematic review was to ascertain the evidence concerning use of direct-to-consumer genomic testing from the consumer perspective. Primary research was identified using the search terms ‘direct-to-consumer' and ‘genomic or genetic' in six bibliographic databases and citation searching of findings. In all, 17 papers were reviewed: 3 qualitative and 14 quantitative. Findings indicate a low level of awareness of direct-to-consumer genomic testing and, because of the hypothetical nature of many studies, little evidence from users of such tests. Although potential users appear to be interested in information about their risks of developing common diseases, concerns were expressed about privacy of genetic risk information and the reliability of genomic tests. Consumers were anxious about the nature of the results. There appeared to be a preference to access genomic tests via a health professional, or to discuss the results and obtain advice from a health professional. Authors of only two papers recruited participants who had used direct-to-consumer tests and samples from the large quantitative studies were not representative of the population. These factors limit the value of the available evidence. However, we conclude that there is public interest in direct-to-consumer genomic tests, and that this is likely to result in an increased workload for a range of health professionals. We also consider that there are educational implications for both consumers and health professionals.
direct-to-consumer; genomic testing; genetic testing; health professionals; consumers