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Understanding critical health literacy: a concept analysis
Sykes, Susie
Wills, Jane
Rowlands, Gillian
Popple, Keith
BMC Public Health
Interest in and debates around health literacy have grown over the last two decades and key to the discussions has been the distinction made between basic functional health literacy, communicative/interactive health literacy and critical health literacy. Of these, critical health literacy is the least well developed and differing interpretations of its constituents and relevance exist. The aim of this study is to rigorously analyse the concept of critical health literacy in order to offer some clarity of definition upon which appropriate theory, well grounded practice and potential measurement tools can be based.
The study uses a theoretical and colloquial evolutionary concept analysis method to systematically identify the features associated with this concept. A unique characteristic of this method is that it practically combines an analysis of the literature with in depth interviews undertaken with practitioners and policy makers who have an interest in the field. The study also analyses how the concept is understood across the contexts of time, place, discipline and use by health professionals, policy makers and academics.
Findings revealed a distinct set of characteristics of advanced personal skills, health knowledge, information skills, effective interaction between service providers and users, informed decision making and empowerment including political action as key features of critical health literacy. The potential consequences of critical health literacy identified are in improving health outcomes, creating more effective use of health services and reducing inequalities in health thus demonstrating the relevance of this concept to public health and health promotion.
While critical health literacy is shown to be a unique concept, there remain significant contextual variations in understanding particularly between academics, practitioners and policy makers. Key attributes presented as part of this concept when it was first introduced in the literature, particularly those around empowerment, social and political action and the existence of the concept at both an individual and population level, have been lost in more recent representations. This has resulted in critical health literacy becoming restricted to a higher order cognitive individual skill rather than a driver for political and social change. The paper argues that in order to retain the uniqueness and usefulness of the concept in practice efforts should be made to avoid this dilution of meaning.
Critical health literacy; Health literacy; Empowerment; Concept analysis
Related Articles
Which providers can bridge the health literacy gap in lifestyle risk factor modification education: a systematic review and narrative synthesis
Dennis, Sarah
Williams, Anna
Taggart, Jane
Newall, Anthony
Denney-Wilson, Elizabeth
Zwar, Nicholas
Shortus, Tim
Harris, Mark F
BMC Family Practice
People with low health literacy may not have the capacity to self-manage their health and prevent the development of chronic disease through lifestyle risk factor modification. The aim of this narrative synthesis is to determine the effectiveness of primary healthcare providers in developing health literacy of patients to make SNAPW (smoking, nutrition, alcohol, physical activity and weight) lifestyle changes.
Studies were identified by searching Medline, Embase, Cochrane Library, CINAHL, Joanna Briggs Institute, Psychinfo, Web of Science, Scopus, APAIS, Australian Medical Index, Community of Science and Google Scholar from 1 January 1985 to 30 April 2009. Health literacy and related concepts are poorly indexed in the databases so a list of text words were developed and tested for use. Hand searches were also conducted of four key journals. Studies published in English and included males and females aged 18 years and over with at least one SNAPW risk factor for the development of a chronic disease. The interventions had to be implemented within primary health care, with an aim to influence the health literacy of patients to make SNAPW lifestyle changes. The studies had to report an outcome measure associated with health literacy (knowledge, skills, attitudes, self efficacy, stages of change, motivation and patient activation) and SNAPW risk factor.
The definition of health literacy in terms of functional, communicative and critical health literacy provided the guiding framework for the review.
52 papers were included that described interventions to address health literacy and lifestyle risk factor modification provided by different health professionals. Most of the studies (71%, 37/52) demonstrated an improvement in health literacy, in particular interventions of a moderate to high intensity.
Non medical health care providers were effective in improving health literacy. However this was confounded by intensity of intervention. Provider barriers impacted on their relationship with patients.
Capacity to provide interventions of sufficient intensity is an important condition for effective health literacy support for lifestyle change. This has implications for workforce development and the organisation of primary health care.
Health literacy; Lifestyle risk factor modification; Primary health care
Related Articles
The development of health literacy in patients with a long-term health condition: the health literacy pathway model
Edwards, Michelle
Wood, Fiona
Davies, Myfanwy
Edwards, Adrian
BMC Public Health
Inadequate health literacy has been associated with poor management of long-term health conditions and has been identified as a key social determinant of health outcomes. However, little is understood about how health literacy might develop over time or the processes by which people may become more health literate. Our objectives were to describe how patients with a long-term condition practice health literacy in the management of their health and communication with health professionals, how they become more health literate over time and their experience of using health services. We also sought to identify and describe the motivations, facilitators and barriers in the practice of health literacy in healthcare consultations.
We designed a longitudinal qualitative study using serial interviews with 18 participants to explore their experiences of learning to manage their condition and their experiences of health literacy when participating in healthcare processes. Participants were recruited from patient education programmes and were interviewed three times over a period of 9 months. A framework approach was used to analyse data.
A model is presented that illustrates the development of health literacy along a trajectory that includes the development of knowledge, health literacy skills and practices, health literacy actions, abilities in seeking options and informed and shared decision making opportunities. Motivations and barriers to developing and practising health literacy skills partly reflected participants' characteristics but were also influenced by health professionals. Some participants developed their health literacy to a point where they became more involved in healthcare processes (including informed and shared decision-making).
Patients with a long-term condition can develop health literacy skills over time and put their skills into practice in becoming more active in healthcare consultations. Our findings have implications for developing health literacy interventions aimed at patient involvement in healthcare processes and improved self-management of long-term conditions.
Related Articles
Professional Uncertainty and Disempowerment Responding to Ethnic Diversity in Health Care: A Qualitative Study
Kai, Joe
Beavan, Jackie
Faull, Christina
Dodson, Lynne
Gill, Paramjit
Beighton, Angela
PLoS Medicine
While ethnic disparities in health and health care are increasing, evidence on how to enhance quality of care and reduce inequalities remains limited. Despite growth in the scope and application of guidelines on "cultural competence," remarkably little is known about how practising health professionals experience and perceive their work with patients from diverse ethnic communities. Using cancer care as a clinical context, we aimed to explore this with a range of health professionals to inform interventions to enhance quality of care.
Methods and Findings
We conducted a qualitative study involving 18 focus groups with a purposeful sample of 106 health professionals of differing disciplines, in primary and secondary care settings, working with patient populations of varying ethnic diversity in the Midlands of the UK. Data were analysed by constant comparison and we undertook processes for validation of analysis. We found that, as they sought to offer appropriate care, health professionals wrestled with considerable uncertainty and apprehension in responding to the needs of patients of ethnicities different from their own. They emphasised their perceived ignorance about cultural difference and were anxious about being culturally inappropriate, causing affront, or appearing discriminatory or racist. Professionals' ability to think and act flexibly or creatively faltered. Although trying to do their best, professionals' uncertainty was disempowering, creating a disabling hesitancy and inertia in their practice. Most professionals sought and applied a knowledge-based cultural expertise approach to patients, though some identified the risk of engendering stereotypical expectations of patients. Professionals' uncertainty and disempowerment had the potential to perpetuate each other, to the detriment of patient care.
This study suggests potential mechanisms by which health professionals may inadvertently contribute to ethnic disparities in health care. It identifies critical opportunities to empower health professionals to respond more effectively. Interventions should help professionals acknowledge their uncertainty and its potential to create inertia in their practice. A shift away from a cultural expertise model toward a greater focus on each patient as an individual may help.
From a qualitative study, Joe Kai and colleagues have identified opportunities to empower health professionals to respond more effectively to challenges in their work with patients from diverse ethnic communities.
Editors' Summary
Communities are increasingly diverse in terms of ethnicity (belonging to a group of people defined by social characteristics such as cultural tradition or national origin) and race (belonging to a group identified by inherited physical characteristics). Although health professionals and governments are striving to ensure that everybody has the same access to health care, there is increasing evidence of ethnic inequalities in health-care outcomes. Some of these inequalities reflect intrinsic differences between groups of people—Ashkenazi Jews, for example, often carry an altered gene that increases their chance of developing aggressive breast cancer. Often, however, these differences reflect inequalities in the health care received by different ethnic groups. To improve this situation, "cultural competence" has been promoted over recent years. Cultural competence is the development of skills by individuals and organizations that allow them to work effectively with people from different cultures. Health professionals are now taught about ethnic differences in health beliefs and practices, religion, and communication styles to help them provide the best service to all their patients.
Why Was This Study Done?
Numerous guidelines aim to improve cultural competency but little is known about how health professionals experience and perceive their work with patients from diverse ethnic groups. Is their behavior influenced by ethnicity in ways that might contribute to health care disparities? For example, do doctors sometimes avoid medical examinations for fear of causing offence because of cultural differences? If more were known about how health professionals handle ethnic diversity (a term used here to include both ethnicity and race) it might be possible to reduce ethnic inequalities in health care. In this qualitative study, the researchers have explored how health professionals involved in cancer care are affected by working with ethnically diverse patients. A qualitative study is one that collects nonquantitative data such as how doctors "feel" about treating people of different ethnic backgrounds; a quantitative study might compare clinical outcomes in different ethnic groups.
What Did the Researchers Do and Find?
The researchers enrolled 106 doctors, nurses, and other health-related professionals from different health-service settings in the Midlands, an ethnically diverse region of the UK. They organized 18 focus groups in which the health professionals described their experiences of caring for people from ethnic minority backgrounds. The participants were encouraged to recall actual cases and to identify what they saw as problems and strengths in their interactions with these patients. The researchers found that the health professionals wrestled with many challenges when providing health care for patients from diverse ethnic backgrounds. These challenges included problems with language and with general communication (for example, deciding when it was acceptable to touch a patient to show empathy). Health professionals also worried they did not know enough about cultural differences. As a result, they said they often felt uncertain of their ability to avoid causing affront or appearing racist. This uncertainty, the researchers report, disempowered the health professionals, sometimes making them hesitate or fail to do what was best for their patient.
What Do These Findings Mean?
These findings reveal that health professionals often experience considerable uncertainty when caring for ethnically diverse patients, even after training in cultural competency. They also show that this uncertainty can lead to hesitancy and inertia, which might contribute to ethnic health care inequalities. Because the study participants were probably already interested in ethnic diversity and health care, interviews with other health professionals (and investigations of patient experiences) are needed to confirm these findings. Nevertheless, the researchers suggest several interventions that might reduce health care inequalities caused by ethnic diversity. For example, health professionals should be encouraged to recognize their uncertainty and should have access to more information and training about ethnic differences. In addition, there should be a shift in emphasis away from relying on knowledge-based cultural information towards taking an "ethnographic" approach. In other words, health professionals should be helped to feel able to ask their patients about what matters most to them as individuals about their illness and treatment.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0040323.
Information on cultural competence and health care is available from the US National Center for Cultural Competence (in English and Spanish) and DiversityRx
PROCEED (Professionals Responding to Cancer in Ethnic Diversity) is a multimedia training tool for educators within the health and allied professions developed from the results of this study; a press release on PROCEED is available from the University of Nottingham
Transcultural Health Care Practice: An educational resource for nurses and health care practitioners is available on the web site of the UK Royal College of Nursing
Related Articles
The Effectiveness of Mobile-Health Technologies to Improve Health Care Service Delivery Processes: A Systematic Review and Meta-Analysis
Free, Caroline
Phillips, Gemma
Watson, Louise
Galli, Leandro
Felix, Lambert
Edwards, Phil
Patel, Vikram
Haines, Andy
PLoS Medicine
Caroline Free and colleagues systematically review controlled trials of mobile technology interventions to improve health care delivery processes and show that current interventions give only modest benefits and that high-quality trials measuring clinical outcomes are needed.
Mobile health interventions could have beneficial effects on health care delivery processes. We aimed to conduct a systematic review of controlled trials of mobile technology interventions to improve health care delivery processes.
Methods and Findings
We searched for all controlled trials of mobile technology based health interventions using MEDLINE, EMBASE, PsycINFO, Global Health, Web of Science, Cochrane Library, UK NHS HTA (Jan 1990–Sept 2010). Two authors independently extracted data on allocation concealment, allocation sequence, blinding, completeness of follow-up, and measures of effect. We calculated effect estimates and we used random effects meta-analysis to give pooled estimates.
We identified 42 trials. None of the trials had low risk of bias. Seven trials of health care provider support reported 25 outcomes regarding appropriate disease management, of which 11 showed statistically significant benefits. One trial reported a statistically significant improvement in nurse/surgeon communication using mobile phones. Two trials reported statistically significant reductions in correct diagnoses using mobile technology photos compared to gold standard. The pooled effect on appointment attendance using text message (short message service or SMS) reminders versus no reminder was increased, with a relative risk (RR) of 1.06 (95% CI 1.05–1.07, I2 = 6%). The pooled effects on the number of cancelled appointments was not significantly increased RR 1.08 (95% CI 0.89–1.30). There was no difference in attendance using SMS reminders versus other reminders (RR 0.98, 95% CI 0.94–1.02, respectively). To address the limitation of the older search, we also reviewed more recent literature.
The results for health care provider support interventions on diagnosis and management outcomes are generally consistent with modest benefits. Trials using mobile technology-based photos reported reductions in correct diagnoses when compared to the gold standard. SMS appointment reminders have modest benefits and may be appropriate for implementation. High quality trials measuring clinical outcomes are needed.
Please see later in the article for the Editors' Summary
Editors' Summary
Over the past few decades, computing and communication technologies have changed dramatically. Bulky, slow computers have been replaced by portable devices that can complete increasingly complex tasks in less and less time. Similarly, landlines have been replaced by mobile phones and other mobile communication technologies that can connect people anytime and anywhere, and that can transmit text messages (short message service; SMS), photographs, and data at the touch of a button. These advances have led to the development of mobile-health (mHealth)—the use of mobile computing and communication technologies in health care and public health. mHealth has many applications. It can be used to facilitate data collection and to encourage health-care consumers to adopt healthy lifestyles or to self-manage chronic conditions. It can also be used to improve health-care service delivery processes by targeting health-care providers or communication between these providers and their patients. So, for example, mobile technologies can be used to provide clinical management support in settings where there are no specialist clinicians, and they can be used to send patients test results and timely reminders of appointments.
Why Was This Study Done?
Many experts believe that mHealth interventions could greatly improve health-care delivery processes, particularly in resource-poor settings. The results of several controlled trials (studies that compare the outcomes of people who do or do not receive an intervention) of mHealth interventions designed to improve health-care delivery processes have been published. However, these data have not been comprehensively reviewed, and the effectiveness of this type of mHealth intervention has not been quantified. Here, the researchers rectify this situation by undertaking a systematic review and meta-analysis of controlled trials of mobile technology-based interventions designed to improve health-care service delivery processes. A systematic review is a study that uses predefined criteria to identify all the research on a given topic; a meta-analysis is a statistical approach that is used to pool the results of several independent studies.
What Did the Researchers Do and Find?
The researchers identified 42 controlled trials that investigated mobile technology-based interventions designed to improve health-care service delivery processes. None of the trials were of high quality—many had methodological problems likely to affect the accuracy of their findings—and nearly all were undertaken in high-income countries. Thirty-two of the trials tested interventions directed at health-care providers. Of these trials, seven investigated interventions providing health-care provider education, 18 investigated interventions supporting clinical diagnosis and treatment, and seven investigated interventions to facilitate communication between health-care providers. Several of the trials reported that the tested intervention led to statistically significant improvements (improvements unlikely to have happened by chance) in outcomes related to disease management. However, two trials that used mobile phones to transmit photos to off-site clinicians for diagnosis reported significant reductions in correct diagnoses compared to diagnosis by an on-site specialist. Ten of the 42 trials investigated interventions targeting communication between health-care providers and patients. Eight of these trials investigated SMS-based appointment reminders. Meta-analyses of the results of these trials indicated that using SMS appointment reminders significantly but modestly increased patient attendance compared to no reminders. However, SMS reminders were no more effective than postal or phone call reminders, and texting reminders to patients who persistently missed appointments did not significantly change the number of cancelled appointments.
What Do These Findings Mean?
These findings indicate that some mHealth interventions designed to improve health-care service delivery processes are modestly effective, but they also highlight the need for more trials of these interventions. Specifically, these findings show that although some interventions designed to provide support for health-care providers modestly improved some aspects of clinical diagnosis and management, other interventions had deleterious effects—most notably, the use of mobile technology–based photos for diagnosis. In terms of mHealth interventions targeting communication between health-care providers and patients, the finding that SMS appointment reminders have modest benefits suggests that implementation of this intervention should be considered, at least in high-income settings. However, the researchers stress that more trials are needed to robustly establish the ability of mobile technology-based interventions to improve health-care delivery processes. These trials need to be of high quality, they should be undertaken in resource-limited settings as well as in high-income countries, and, ideally, they should consider interventions that combine mHealth and conventional approaches.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001363.
A related PLOS Medicine Research Article by Free et al. investigates the effectiveness of mHealth technology-based health behavior change and disease management interventions for health-care consumers
Wikipedia has a page on mHealth (note: Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
mHealth: New horizons for health through mobile technologies is a global survey of mHealth prepared by the World Health Organization's Global Observatory for eHealth (eHealth is health-care practice supported by electronic processes and communication)
The mHealth in Low-Resource Settings website, which is maintained by the Netherlands Royal Tropical Institute, provides information on the current use, potential, and limitations of mHealth in low-resource settings
The US National Institutes of Health Fogarty International Center provides links to resources and information about mHealth
Related Articles
A Guide for Health Professionals Working with Aboriginal Peoples: Executive Summary
Journal SOGC : journal of the Society of Obstetricians and Gynaecologists of Canada
to provide Canadian health professionals with a network of information and recommendations regarding Aboriginal health.
health professionals working with Aboriginal individuals and communities in the area of women's health care.
improved health status of Aboriginal peoples in Canada.
Appropriateness and accessibility of women's health services for Aboriginal peoples.
Improved communication and clinical skills of health professionals in the area of Aboriginal health.
Improved quality of relationship between health professionals and Aboriginal individuals and communities.
Improved quality of relationship between health care professionals and Aboriginal individuals and communities.
recommendations are based on expert opinion and a review of the literature. Published references were identified by a Medline search of all review articles, randomized clinical control trials, meta-analyses, and practice guidelines from 1966 to February 1999, using the MeSH headings "Indians, North American or Eskimos" and "Health."* Subsequently published articles were brought to the attention of the authors in the process of writing and reviewing the document. Ancillary and unpublished references were recommended by members of the SOGC Aboriginal Health Issues Committee and the panel of expert reviewers.
information collected was reviewed by the principal author. The social, cultural, political, and historic context of Aboriginal peoples in Canada, systemic barriers regarding the publication of information by Aboriginal authors, the diversity of Aboriginal peoples in Canada, and the need for a culturally appropriate and balanced presentation were carefully considered in addition to more traditional scientific evaluation. The majority of information collected consisted of descriptive health and social information and such evaluation tools as the evidence guidelines of the Canadian Task Force on the Periodic Health exam were not appropriate.
Benefits, costs, and harms
utilization of the information and recommendations by Canadian health professionals will enhance understanding, communication, and clinical skills in the area of Aboriginal health. The resulting enhancement of collaborative relationships between Aboriginal peoples and their women's health providers may contribute to health services that are more appropriate, effective, efficient, and accessible for Aboriginal peoples in Canada. The educational process may require an initial investment of time from the health professional.
Recommendations were grouped according to four themes: sociocultural context, health concerns, cross-cultural understanding, and Aboriginal health resources. Health professionals are encouraged to learn the appropriate names, demographics, and traditional geographic territories and language groups of the various Aboriginal groups in Canada. In addition, sensitivity to the impact of colonization and current socioeconomic challenges to the health status of Aboriginal peoples is warranted. Health services for Aboriginal peoples should take place as close to home as possible. Governmental obligations and policies regarding determination are recognized. With respect to health concerns, holistic definitions of health, based on Aboriginal perspectives, are put forward. Aboriginal peoples continue to experience a disproportionate burden of health problems. Health professionals are encouraged to become familiar with several key areas of morbidity and mortality. Relationships between Aboriginal peoples and their care providers need to be based on a foundation of mutual respect. Gaps and barriers in the current health care system for Aboriginal peoples are identified. Health professionals are encouraged to work with Aboriginal individuals and communities to address these gaps and barriers. Aboriginal peoples require culturally appropriate health care, including treatment in their own languages when possible. This may require interpreters or Aboriginal health advocates. Health professionals are encouraged to recognize the importance of family and community roles, and to respect traditional medicines and healers. Health professionals can develop their sensitivities towards Aboriginal peoples by participating in workshops, making use of educational resources, and by spending time with Aboriginal peoples in their communities. Aboriginal communities and health professionals are encouraged to support community-based, community-directed health services and health research for Aboriginal peoples. In addition, the education of more Aboriginal health professionals is essential. The need for a preventative approach to health programming in Aboriginal communities is stressed.
recommendations were reviewed and revised by the SOGC Aboriginal Health Issues Committee, a panel of expert reviewers, and the SOGC Council. In addition, this document was also reviewed and supported by the Assembly of First Nations, Canadian Institute of Child Health, Canadian Paediatric Society, College of Family Physicians of Canada, Congress of Aboriginal Peoples, Federation of Medical Women of Canada, Inuit Tapirisat of Canada, Metis National Council, National Indian and Inuit Community Health Representatives Organization, and Pauktuutit Inuit Women's Association.
Society of Obstetricians and Gynaecologists of Canada.
Related Articles
The OPtimising HEalth LIterAcy (Ophelia) process: study protocol for using health literacy profiling and community engagement to create and implement health reform
Batterham, Roy W
Buchbinder, Rachelle
Beauchamp, Alison
Dodson, Sarity
Elsworth, Gerald R
Osborne, Richard H
BMC Public Health
Health literacy is a multi-dimensional concept comprising a range of cognitive, affective, social, and personal skills and attributes. This paper describes the research and development protocol for a large communities-based collaborative project in Victoria, Australia that aims to identify and respond to health literacy issues for people with chronic conditions. The project, called Ophelia (OPtimising HEalth LIterAcy) Victoria, is a partnership between two universities, eight service organisations and the Victorian Government. Based on the identified issues, it will develop and pilot health literacy interventions across eight disparate health services to inform the creation of a health literacy response framework to improve health outcomes and reduce health inequalities.
The protocol draws on many inputs including the experience of the partners in previous co-creation and roll-out of large-scale health-promotion initiatives. Three key conceptual models/discourses inform the protocol: intervention mapping; quality improvement collaboratives, and realist synthesis. The protocol is outcomes-oriented and focuses on two key questions: 'What are the health literacy strengths and weaknesses of clients of participating sites?', and 'How do sites interpret and respond to these in order to achieve positive health and equity outcomes for their clients?'. The process has six steps in three main phases. The first phase is a needs assessment that uses the Health Literacy Questionnaire (HLQ), a multi-dimensional measure of health literacy, to identify common health literacy needs among clients. The second phase involves front-line staff and management within each service organisation in co-creating intervention plans to strategically respond to the identified local needs. The third phase will trial the interventions within each site to determine if the site can improve identified limitations to service access and/or health outcomes.
There have been few attempts to assist agencies to identify, and respond, in a planned way, to the varied health literacy needs of their clients. This project will assess the potential for targeted, locally-developed health literacy interventions to improve access, equity and outcomes.
Health literacy; Equity; Chronic illness; Access; Implementation; Intervention development; Intervention mapping; Participatory research; Health Literacy Questionnaire (HLQ); Co-creation
Related Articles
Details for Manuscript Number SSM-D-06-01826R1 "Assessing the Oral Literacy Burden in Genetic Counseling Dialogue"
Roter, Debra L.
Erby, Lori H
Larson, Susan
Ellington, Lee
Social science & medicine (1982)
Health literacy deficits affect half the American patient population and are linked to poor health, ineffective disease management and high rates of hospitalization. Restricted literacy has also been linked with less satisfying medical visits and communication difficulties, particularly in terms of the interpersonal and informational aspects of care. Despite growing attention to these issues by researchers and policy makers, few studies have attempted to conceptualize and assess those aspects of dialogue that challenge persons with low literacy skills, i.e., the oral literacy demand within medical encounters.
The current study uses videotapes and transcripts of 152 prenatal and cancer pretest genetic counseling sessions recorded with simulated clients to develop a conceptual framework to explore oral literacy demand and its consequences for medical interaction and related outcomes. Ninety-six prenatal and 81 genetic counselors – broadly representative of the US National Society of Genetic Counselors – participated in the study. Key elements of the conceptual framework used to define oral literacy demand include: (1) use of unfamiliar technical terms; (2) general language complexity, reflected in the application of Microsoft Word grammar summary statistics to session transcripts; and, (3) structural characteristics of dialogue, including pacing, density, and interactivity. Genetic counselor outcomes include self-ratings of session satisfaction, informativeness, and development of rapport. The simulated clients rated their satisfaction with session communication, the counselor's effective use of nonverbal skills, and the counselor's affective demeanor during the session.
Sessions with greater overall technical term use were long and used more complex language reflected in readability indices and multi-syllabic vocabulary (measures averaging p<.05). Sessions with a high proportionate use of technical terms were characterized by shorter visits, high readability demand, slow speech speed, fewer and more dense counselor speaking turns and low interactivity (p<.05). The higher the use of technical terms, and the more dense and less interactive the dialogue, the less satisfied the simulated clients were and the lower their ratings were of counselors' nonverbal effectiveness and affective demeanor (all relationships p<.05). Counselors' self-ratings of informativeness were also inversely related to use of technical terms (p< .05).
Just as print material can be made more reader-friendly and effective following established guidelines, the medical dialogue may also be made more patient-centered and meaningful by having providers monitor their vocabulary and language, as well as the structural characteristics of interaction, thereby lowering the literacy demand of routine medical dialogue. These consequences are important for all patients but may be even more so for patients with restricted literacy.
health literacy; oral literacy; patient-provider; communication; genetic counseling; USA
Related Articles
The Effect of Individual Factors on Health Behaviors Among College Students: The Mediating Effects of eHealth Literacy
Hsu, WanChen
Chiang, ChiaHsun
Yang, ShuChing
Journal of Medical Internet Research
College students' health behavior is a topic that deserves attention. Individual factors and eHealth literacy may affect an individual's health behaviors. The integrative model of eHealth use (IMeHU) provides a parsimonious account of the connections among the digital divide, health care disparities, and the unequal distribution and use of communication technologies. However, few studies have explored the associations among individual factors, eHealth literacy, and health behaviors, and IMeHU has not been empirically investigated.
This study examines the associations among individual factors, eHealth literacy, and health behaviors using IMeHU.
The Health Behavior Scale is a 12-item instrument developed to measure college students' eating, exercise, and sleep behaviors. The eHealth Literacy Scale is a 12-item instrument designed to measure college students' functional, interactive, and critical eHealth literacy. A nationally representative sample of 525 valid college students in Taiwan was surveyed. A questionnaire was administered to collect background information about participants' health status, degree of health concern, major, and the frequency with which they engaged in health-related discussions. This study used Amos 6.0 to conduct a confirmatory factor analysis to identify the best measurement models for the eHealth Literacy Scale and the Health Behavior Scale. We then conducted a multiple regression analysis to examine the associations among individual factors, eHealth literacy, and health behaviors. Additionally, causal steps approach was used to explore indirect (mediating) effects and Sobel tests were used to test the significance of the mediating effects.
The study found that perceptions of better health status (t520=2.14-6.12, P<.001-.03) and greater concern for health (t520=2.58-6.95, P<.001-.003) influenced college students' development of 3 dimensions of eHealth literacy and adoption of healthy eating, exercise, and sleep behaviors. Moreover, eHealth literacy played an intermediary role in the association between individual factors and health behaviors (Sobel test=2.09-2.72, P<.001-.03). Specifically, higher levels of critical eHealth literacy promoted students' health status and their practice of multiple positive health behaviors, including eating, exercise, and sleep behaviors.
Because this study showed that eHealth literacy mediates the association between individual factors and health behaviors, schools should aim to enhance students' eHealth literacy and promote their health behaviors to help them achieve high levels of critical eHealth literacy. Although some of the study's hypotheses were not supported in this study, the factors that influence health behaviors are complex and interdependent. Therefore, a follow-up study should be conducted to further explore how these factors influence one another.
demographic; health behavior; mediation; eHealth literacy; quantitative evaluation
Related Articles
A Framework for Characterizing eHealth Literacy Demands and Barriers
Chan, Connie V
Kaufman, David R
Journal of Medical Internet Research
Consumer eHealth interventions are of a growing importance in the individual management of health and health behaviors. However, a range of access, resources, and skills barriers prevent health care consumers from fully engaging in and benefiting from the spectrum of eHealth interventions. Consumers may engage in a range of eHealth tasks, such as participating in health discussion forums and entering information into a personal health record. eHealth literacy names a set of skills and knowledge that are essential for productive interactions with technology-based health tools, such as proficiency in information retrieval strategies, and communicating health concepts effectively.
We propose a theoretical and methodological framework for characterizing complexity of eHealth tasks, which can be used to diagnose and describe literacy barriers and inform the development of solution strategies.
We adapted and integrated two existing theoretical models relevant to the analysis of eHealth literacy into a single framework to systematically categorize and describe task demands and user performance on tasks needed by health care consumers in the information age. The method derived from the framework is applied to (1) code task demands using a cognitive task analysis, and (2) code user performance on tasks. The framework and method are applied to the analysis of a Web-based consumer eHealth task with information-seeking and decision-making demands. We present the results from the in-depth analysis of the task performance of a single user as well as of 20 users on the same task to illustrate both the detailed analysis and the aggregate measures obtained and potential analyses that can be performed using this method.
The analysis shows that the framework can be used to classify task demands as well as the barriers encountered in user performance of the tasks. Our approach can be used to (1) characterize the challenges confronted by participants in performing the tasks, (2) determine the extent to which application of the framework to the cognitive task analysis can predict and explain the problems encountered by participants, and (3) inform revisions to the framework to increase accuracy of predictions.
The results of this illustrative application suggest that the framework is useful for characterizing task complexity and for diagnosing and explaining barriers encountered in task completion. The framework and analytic approach can be a potentially powerful generative research platform to inform development of rigorous eHealth examination and design instruments, such as to assess eHealth competence, to design and evaluate consumer eHealth tools, and to develop an eHealth curriculum.
eHealth; health literacy; cognition; Bloom's taxonomy; cognitive task analysis; consumer health
Related Articles
eHealth Literacy Among College Students: A Systematic Review With Implications for eHealth Education
Stellefson, Michael
Hanik, Bruce
Chaney, Beth
Chaney, Don
Tennant, Bethany
Chavarria, Enmanuel Antonio
Journal of Medical Internet Research
eHealth literacy refers to the ability of individuals to seek, find, understand, and appraise health information from electronic resources and apply such knowledge to addressing or solving a health problem. While the current generation of college students has access to a multitude of health information on the Internet, access alone does not ensure that students are skilled at conducting Internet searches for health information. Ensuring that college students have the knowledge and skills necessary to conduct advanced eHealth searches is an important responsibility particularly for the medical education community. It is unclear if college students, especially those in the medical and health professions, need customized eHealth literacy training for finding, interpreting, and evaluating health- and medical-related information available on the Internet.
The objective of our review was to summarize and critically evaluate the evidence from existing research on eHealth literacy levels among college students between the ages of 17 and 26 years attending various 4-year colleges and universities located around the world.
We conducted a systematic literature review on numerous scholarly databases using various combinations of relevant search terms and Boolean operators. The records were screened and assessed for inclusion in the review based on preestablished criteria. Findings from each study that met inclusion criteria were synthesized and summarized into emergent themes.
In the final review we analyzed 6 peer-reviewed articles and 1 doctoral dissertation that satisfied the inclusion criteria. The number of participants in each reviewed study varied widely (from 34 to 5030). The representativeness of the results from smaller studies is questionable. All studies measured knowledge and/or behaviors related to college student ability to locate, use, and evaluate eHealth information. These studies indicated that many college students lack eHealth literacy skills, suggesting that there is significant room for improvement in college students' ability to obtain and evaluate eHealth information.
Although college students are highly connected to, and feel comfortable with, using the Internet to find health information, their eHealth literacy skills are generally sub par. College students, especially in the health and medical professions, would be well served to receive more customized college-level instruction that improves general eHealth literacy.
eHealth literacy; college students; health occupations; professional preparation
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Non-Specialist Psychosocial Interventions for Children and Adolescents with Intellectual Disability or Lower-Functioning Autism Spectrum Disorders: A Systematic Review
Reichow, Brian
Servili, Chiara
Yasamy, M. Taghi
Barbui, Corrado
Saxena, Shekhar
PLoS Medicine
In a systematic review, Brian Reichow and colleagues assess the evidence that non-specialist care providers in community settings can provide effective interventions for children and adolescents with intellectual disabilities or lower-functioning autism spectrum disorders.
Please see later in the article for the Editors' Summary
The development of effective treatments for use by non-specialists is listed among the top research priorities for improving the lives of people with mental illness worldwide. The purpose of this review is to appraise which interventions for children with intellectual disabilities or lower-functioning autism spectrum disorders delivered by non-specialist care providers in community settings produce benefits when compared to either a no-treatment control group or treatment-as-usual comparator.
Methods and Findings
We systematically searched electronic databases through 24 June 2013 to locate prospective controlled studies of psychosocial interventions delivered by non-specialist providers to children with intellectual disabilities or lower-functioning autism spectrum disorders. We screened 234 full papers, of which 34 articles describing 29 studies involving 1,305 participants were included. A majority of the studies included children exclusively with a diagnosis of lower-functioning autism spectrum disorders (15 of 29, 52%). Fifteen of twenty-nine studies (52%) were randomized controlled trials and just under half of all effect sizes (29 of 59, 49%) were greater than 0.50, of which 18 (62%) were statistically significant. For behavior analytic interventions, the best outcomes were shown for development and daily skills; cognitive rehabilitation, training, and support interventions were found to be most effective for improving developmental outcomes, and parent training interventions to be most effective for improving developmental, behavioral, and family outcomes. We also conducted additional subgroup analyses using harvest plots. Limitations include the studies' potential for performance bias and that few were conducted in lower- and middle-income countries.
The findings of this review support the delivery of psychosocial interventions by non-specialist providers to children who have intellectual disabilities or lower-functioning autism spectrum disorders. Given the scarcity of specialists in many low-resource settings, including many lower- and middle-income countries, these findings may provide guidance for scale-up efforts for improving outcomes for children with developmental disorders or lower-functioning autism spectrum disorders.
Protocol Registration
Please see later in the article for the Editors' Summary
Editors' Summary
Newborn babies are helpless, but over the first few years of life, they acquire motor (movement) skills, language (communication) skills, cognitive (thinking) skills, and social (interpersonal interaction) skills. Individual aspects of these skills are usually acquired at specific ages, but children with a development disorder such as an autism spectrum disorder (ASD) or intellectual disability (mental retardation) fail to reach these "milestones" because of impaired or delayed brain maturation. Autism, Asperger syndrome, and other ASDs (also called pervasive developmental disorders) affect about 1% of the UK and US populations and are characterized by abnormalities in interactions and communication with other people (reciprocal socio-communicative interactions; for example, some children with autism reject physical affection and fail to develop useful speech) and a restricted, stereotyped, repetitive repertoire of interests (for example, obsessive accumulation of facts about unusual topics). About half of individuals with an ASD also have an intellectual disability—a reduced overall level of intelligence characterized by impairment of the skills that are normally acquired during early life. Such individuals have what is called lower-functioning ASD.
Why Was This Study Done?
Most of the children affected by developmental disorders live in low- and middle-income countries where there are few services available to help them achieve their full potential and where little research has been done to identify the most effective treatments. The development of effective treatments for use by non-specialists (for example, teachers and parents) is necessary to improve the lives of people with mental illnesses worldwide, but particularly in resource-limited settings where psychiatrists, psychologists, and other specialists are scarce. In this systematic review, the researchers investigated which psychosocial interventions for children and adolescents with intellectual disabilities or lower-functioning ASDs delivered by non-specialist providers in community settings produce improvements in development, daily skills, school performance, behavior, or family outcomes when compared to usual care (the control condition). A systematic review identifies all the research on a given topic using predefined criteria; psychosocial interventions are defined as therapy, education, training, or support aimed at improving behavior, overall development, or specific life skills without the use of drugs.
What Did the Researchers Do and Find?
The researchers identified 29 controlled studies (investigations with an intervention group and a control group) that examined the effects of various psychosocial interventions delivered by non-specialist providers to children (under 18 years old) who had a lower-functioning ASD or intellectual disability. The researchers retrieved information on the participants, design and methods, findings, and intervention characteristics for each study, and calculated effect sizes—a measure of the effectiveness of a test intervention relative to a control intervention—for several outcomes for each intervention. Across the studies, three-quarters of the effect size estimates were positive, and nearly half were greater than 0.50; effect sizes of less than 0.2, 0.2–0.5, and greater than 0.5 indicate that an intervention has no, a small, or a medium-to-large effect, respectively. For behavior analytic interventions (which aim to improve socially significant behavior by systematically analyzing behavior), the largest effect sizes were seen for development and daily skills. Cognitive rehabilitation, training, and support (interventions that facilitates the relearning of lost or altered cognitive skills) produced good improvements in developmental outcomes such as standardized IQ tests in children aged 6–11 years old. Finally, parental training interventions (which teach parents how to provide therapy services for their child) had strong effects on developmental, behavioral, and family outcomes.
What Do These Findings Mean?
Because few of the studies included in this systematic review were undertaken in low- and middle-income countries, the review's findings may not be generalizable to children living in resource-limited settings. Moreover, other characteristics of the included studies may limit the accuracy of these findings. Nevertheless, these findings support the delivery of psychosocial interventions by non-specialist providers to children who have intellectual disabilities or a lower-functioning ASD, and indicate which interventions are likely to produce the largest improvements in developmental, behavioral, and family outcomes. Further studies are needed, particularly in low- and middle-income countries, to confirm these findings, but given that specialists are scarce in many resource-limited settings, these findings may help to inform the implementation of programs to improve outcomes for children with intellectual disabilities or lower-functioning ASDs in low- and middle-income countries.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001572.
This study is further discussed in a PLOS Medicine Perspective by Bello-Mojeed and Bakare
The US Centers for Disease Control and Prevention provides information (in English and Spanish) on developmental disabilities, including autism spectrum disorders and intellectual disability
The US National Institute of Mental Health also provides detailed information about autism spectrum disorders, including the publication "A Parent's Guide to Autism Spectrum Disorder"
Autism Speaks, a US non-profit organization, provides information about all aspects of autism spectrum disorders and includes information on the Autism Speaks Global Autism Public Health Initiative
The National Autistic Society, a UK charity, provides information about all aspects of autism spectrum disorders and includes personal stories about living with these conditions
The UK National Health Service Choices website has an interactive guide to child development and information about autism and Asperger syndrome, including personal stories, and about learning disabilities
The UK National Institute for Health and Care Excellence provides clinical guidelines for the management and support of children with autism spectrum disorders
The World Health Organization provides information on its Mental Health Gap Action Programme (mhGAP), which includes recommendations on the management of developmental disorders by non-specialist providers; the mhGAP Evidence Resource Center provides evidence reviews for parent skills training for management of children with intellectual disabilities and pervasive developmental disorders and interventions for management of children with intellectual disabilities
PROSPERO, an international prospective register of systematic reviews, provides more information about this systematic review
Related Articles
Correlates of health and financial literacy in older adults without dementia
Bennett, Jarred S
Boyle, Patricia A
James, Bryan D
Bennett, David A
BMC Geriatrics
Recent research has begun to recognize the important influence of literacy levels and how they affect health and wellbeing, especially in older adults. Our study focuses on health and financial literacy, two domains of literacy which previous research has suggested may be significantly related to health and wellbeing. Our study examines the relation of health and financial literacy with health promoting behaviors and health status among community-based older persons.
We conducted a cross-sectional study using data from the Rush Memory and Aging Project, a community-based cohort study of aging in northeastern Illinois. The study consisted of 556 older persons without dementia, each determined by a clinical evaluation. Health and financial literacy were measured using a series of questions designed to assess the ability to understand and process health and financial information, concepts, and numeracy; the two scores were averaged to yield a total literacy score. Health promoting behaviors, including engagement in cognitive, physical, and social activities, were assessed using self report measures. Indicators of heath status, including cognition (global cognition and five specific cognitive abilities), functional status (basic and instrumental activities of daily living, mobility disability), and mental health (depressive symptoms, loneliness) were assessed.
In a series of regression models adjusted for age, sex, and education, higher total literacy scores were associated with more frequent participation in health promoting behaviors, including cognitive, physical and social activities (all p values <0.05). Higher total literacy scores were associated with higher cognitive function, less disability, and better mental health (all p values < 0.05). Literacy remained associated with health promoting behaviors and health status in fully adjusted models that also controlled for income and the number of chronic medical conditions. Most of the findings were similar for health and financial literacy except that health literacy was more strongly associated with health promoting behaviors whereas financial literacy was more strongly associated with mental health.
Health and financial literacy are associated with more frequent engagement in health promoting behaviors and better health status in older persons without dementia.
Health literacy; Financial literacy; Older adults; Dementia
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eHealth Literacy: Extending the Digital Divide to the Realm of Health Information
Neter, Efrat
Brainin, Esther
Journal of Medical Internet Research
eHealth literacy is defined as the ability of people to use emerging information and communications technologies to improve or enable health and health care.
The goal of this study was to explore whether literacy disparities are diminished or enhanced in the search for health information on the Internet. The study focused on (1) traditional digital divide variables, such as sociodemographic characteristics, digital access, and digital literacy, (2) information search processes, and (3) the outcomes of Internet use for health information purposes.
We used a countrywide representative random-digital-dial telephone household survey of the Israeli adult population (18 years and older, N = 4286). We measured eHealth literacy; Internet access; digital literacy; sociodemographic factors; perceived health; presence of chronic diseases; as well as health information sources, content, search strategies, and evaluation criteria used by consumers.
Respondents who were highly eHealth literate tended to be younger and more educated than their less eHealth-literate counterparts. They were also more active consumers of all types of information on the Internet, used more search strategies, and scrutinized information more carefully than did the less eHealth-literate respondents. Finally, respondents who were highly eHealth literate gained more positive outcomes from the information search in terms of cognitive, instrumental (self-management of health care needs, health behaviors, and better use of health insurance), and interpersonal (interacting with their physician) gains.
The present study documented differences between respondents high and low in eHealth literacy in terms of background attributes, information consumption, and outcomes of the information search. The association of eHealth literacy with background attributes indicates that the Internet reinforces existing social differences. The more comprehensive and sophisticated use of the Internet and the subsequent increased gains among the high eHealth literate create new inequalities in the domain of digital health information. There is a need to educate at-risk and needy groups (eg, chronically ill) and to design technology in a mode befitting more consumers.
eHealth literacy; digital literacy; health literacy; digital divide; health information search
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Health literacy: health professionals' understandings and their perceptions of barriers that Indigenous patients encounter
Lambert, Michelle
Luke, Joanne
Downey, Bernice
Crengle, Sue
Kelaher, Margaret
Reid, Susan
Smylie, Janet
BMC Health Services Research
Despite the growing interest in health literacy, little research has been done around health professionals' knowledge of health literacy or understandings of the barriers to health literacy that patients face when navigating the health care system. Indigenous peoples in New Zealand (NZ), Canada and Australia experience numerous inequalities in health status and outcomes and international evidence reveals that Indigenous, minority, and socio-economically disadvantaged populations have greater literacy needs. To address concerns in Indigenous health literacy, a two-pronged approach inclusive of both education of health professionals, and structural reform reducing demands the system places on Indigenous patients, are important steps towards reducing these inequalities.
Four Indigenous health care services were involved in the study. Interviews and one focus group were employed to explore the experiences of health professionals working with patients who had experienced cardiovascular disease (CVD) and were taking medications to prevent future events. A thematic analysis was completed and these insights were used in the development of an intervention that was tested as phase two of the study.
Analysis of the data identified ten common themes. This paper concentrates on health professionals' understanding of health literacy and perceptions of barriers that their patients face when accessing healthcare. Health professionals' concepts of health literacy varied and were associated with their perceptions of the barriers that their patients face when attempting to build health literacy skills. These concepts ranged from definitions of health literacy that were focussed on patient deficit to broader definitions that focussed on both patients and the health system. All participants identified a combination of cultural, social and systemic barriers as impediments to their Indigenous patients improving their health literacy knowledge and practices.
This study suggests that health professionals have a limited understanding of health literacy and of the consequences of low health literacy for their Indigenous patients. This lack of understanding combined with the perceived barriers to improving health literacy limit health professionals' ability to improve their Indigenous patients' health literacy skills and may limit patients' capacity to improve understanding of their illness and instructions on how to manage their health condition/s.
Indigenous health; Health literacy; Cardiovascular diseases; Medication knowledge; Community based participatory research
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Self-rated literacy level does not explain educational differences in health and disease
Fransen, Mirjam P
Rowlands, Gillian
Leenaars, Karlijn EF
Essink-Bot, Marie-Louise
Archives of Public Health
Although literacy is increasingly considered to play a role in socioeconomic inequalities in health, its contribution to the explanation of educational differences in health has remained unexplored. The aim of this study was to investigate the contribution of self-rated literacy to educational differences in health.
Data was collected from the Healthy Foundation and Lifestyle Segmentation Dataset (n = 4257). Self-rated literacy was estimated by individuals' self-reported confidence in reading written English. We used logistic regression analyses to assess the association between educational level and health (long term conditions and self-rated health). Self-rated literacy and other potential explanatory variables were separately added to each model. For each added variable we calculated the percentage change in odds ratio to assess the contribution to the explanation of educational differences in health.
People with lower educational attainment level were more likely to report a long term condition (OR 2.04, CI 1.80-2.32). These educational differences could mostly be explained by age (OR decreased by 27%) and could only minimally be explained by self-rated literacy, as measured by self-rated reading skills (OR decreased by 1%). Literacy could not explain differences in cardiovascular condition or diabetes, and only minimally contributed to mental health problems and depression (OR decreased by 5%). The odds of rating ones own health more negatively was higher for people with a low educational level compared to those with a higher educational level (OR 1.83, CI 1.59-2.010), self-rated literacy decreased the OR by 7%.
Measuring self-rated reading skills does not contribute significantly to the explanation of educational differences in health and disease. Further research should aim for the development of objective generic and specific instruments to measure health literacy skills in the context of health care, disease prevention and health promotion. Such instruments are not only important in the explanation of educational differences in health and disease, but can also be used to identify a group at risk of poorer health through low basic skills, enabling health services and health information to be targeted at those with greater need.
Literacy; Health literacy; Literacy measures; Self-rated health; Long term condition; Socio-economic inequalities; Educational inequalities
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The Impact of eHealth on the Quality and Safety of Health Care: A Systematic Overview
Black, Ashly D.
Car, Josip
Pagliari, Claudia
Anandan, Chantelle
Cresswell, Kathrin
Bokun, Tomislav
McKinstry, Brian
Procter, Rob
Majeed, Azeem
Sheikh, Aziz
PLoS Medicine
Aziz Sheikh and colleagues report the findings of their systematic overview that assessed the impact of eHealth solutions on the quality and safety of health care.
There is considerable international interest in exploiting the potential of digital solutions to enhance the quality and safety of health care. Implementations of transformative eHealth technologies are underway globally, often at very considerable cost. In order to assess the impact of eHealth solutions on the quality and safety of health care, and to inform policy decisions on eHealth deployments, we undertook a systematic review of systematic reviews assessing the effectiveness and consequences of various eHealth technologies on the quality and safety of care.
Methods and Findings
We developed novel search strategies, conceptual maps of health care quality, safety, and eHealth interventions, and then systematically identified, scrutinised, and synthesised the systematic review literature. Major biomedical databases were searched to identify systematic reviews published between 1997 and 2010. Related theoretical, methodological, and technical material was also reviewed. We identified 53 systematic reviews that focused on assessing the impact of eHealth interventions on the quality and/or safety of health care and 55 supplementary systematic reviews providing relevant supportive information. This systematic review literature was found to be generally of substandard quality with regards to methodology, reporting, and utility. We thematically categorised eHealth technologies into three main areas: (1) storing, managing, and transmission of data; (2) clinical decision support; and (3) facilitating care from a distance. We found that despite support from policymakers, there was relatively little empirical evidence to substantiate many of the claims made in relation to these technologies. Whether the success of those relatively few solutions identified to improve quality and safety would continue if these were deployed beyond the contexts in which they were originally developed, has yet to be established. Importantly, best practice guidelines in effective development and deployment strategies are lacking.
There is a large gap between the postulated and empirically demonstrated benefits of eHealth technologies. In addition, there is a lack of robust research on the risks of implementing these technologies and their cost-effectiveness has yet to be demonstrated, despite being frequently promoted by policymakers and "techno-enthusiasts" as if this was a given. In the light of the paucity of evidence in relation to improvements in patient outcomes, as well as the lack of evidence on their cost-effectiveness, it is vital that future eHealth technologies are evaluated against a comprehensive set of measures, ideally throughout all stages of the technology's life cycle. Such evaluation should be characterised by careful attention to socio-technical factors to maximise the likelihood of successful implementation and adoption.
Please see later in the article for the Editors' Summary
Editors' Summary
There is considerable international interest in exploiting the potential of digital health care solutions, often referred to as eHealth—the use of information and communication technologies—to enhance the quality and safety of health care. Often accompanied by large costs, any large-scale expenditure on eHealth—such as electronic health records, picture archiving and communication systems, ePrescribing, associated computerized provider order entry systems, and computerized decision support systems—has tended to be justified on the grounds that these are efficient and cost-effective means for improving health care. In 2005, the World Health Assembly passed an eHealth resolution (WHA 58.28) that acknowledged, "eHealth is the cost-effective and secure use of information and communications technologies in support of health and health-related fields, including health-care services, health surveillance, health literature, and health education, knowledge and research," and urged member states to develop and implement eHealth technologies. Since then, implementing eHealth technologies has become a main priority for many countries. For example, England has invested at least £12.8 billion in a National Programme for Information Technology for the National Health Service, and the Obama administration in the United States has committed to a US$38 billion eHealth investment in health care.
Why Was This Study Done?
Despite the wide endorsement of and support for eHealth, the scientific basis of its benefits—which are repeatedly made and often uncritically accepted—remains to be firmly established. A robust evidence-based perspective on the advantages on eHealth could help to suggest priority areas that have the greatest potential for benefit to patients and also to inform international eHealth deliberations on costs. Therefore, in order to better inform the international community, the authors systematically reviewed the published systematic review literature on eHealth technologies and evaluated the impact of these technologies on the quality and safety of health care delivery.
What Did the Researchers Do and Find?
The researchers divided eHealth technologies into three main categories: (1) storing, managing, and transmission of data; (2) clinical decision support; and (3) facilitating care from a distance. Then, implementing methods based on those developed by the Cochrane Collaboration and the NHS Service Delivery and Organisation Programme, the researchers used detailed search strategies and maps of health care quality, safety, and eHealth interventions to identify relevant systematic reviews (and related theoretical, methodological, and technical material) published between 1997 and 2010. Using these techniques, the researchers retrieved a total of 46,349 references from which they identified 108 reviews. The 53 reviews that the researchers finally selected (and critically reviewed) provided the main evidence base for assessing the impact of eHealth technologies in the three categories selected.
In their systematic review of systematic reviews, the researchers included electronic health records and picture archiving communications systems in their evaluation of category 1, computerized provider (or physician) order entry and e-prescribing in category 2, and all clinical information systems that, when used in the context of eHealth technologies, integrate clinical and demographic patient information to support clinician decision making in category 3.
The researchers found that many of the clinical claims made about the most commonly used eHealth technologies were not substantiated by empirical evidence. The evidence base in support of eHealth technologies was weak and inconsistent and importantly, there was insubstantial evidence to support the cost-effectiveness of these technologies. For example, the researchers only found limited evidence that some of the many presumed benefits could be realized; importantly, they also found some evidence that introducing these new technologies may on occasions also generate new risks such as prescribers becoming over-reliant on clinical decision support for e-prescribing, or overestimate its functionality, resulting in decreased practitioner performance.
What Do These Findings Mean?
The researchers found that despite the wide support for eHealth technologies and the frequently made claims by policy makers when constructing business cases to raise funds for large-scale eHealth projects, there is as yet relatively little empirical evidence to substantiate many of the claims made about eHealth technologies. In addition, even for the eHealth technology tools that have proven to be successful, there is little evidence to show that such tools would continue to be successful beyond the contexts in which they were originally developed. Therefore, in light of the lack of evidence in relation to improvements in patient outcomes, as well as the lack of evidence on their cost-effectiveness, the authors say that future eHealth technologies should be evaluated against a comprehensive set of measures, ideally throughout all stages of the technology's life cycle, and include socio-technical factors to maximize the likelihood of successful implementation and adoption in a given context. Furthermore, it is equally important that eHealth projects that have already been commissioned are subject to rigorous, multidisciplinary, and independent evaluation.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000387.
The authors' broader study is: Car J, Black A, Anandan C, Cresswell K, Pagliari C, McKinstry B, et al. (2008) The Impact of eHealth on the Quality and Safety of Healthcare. Available at: http://www.haps.bham.ac.uk/publichealth/cfhep/001.shtml
More information is available on the World Health Assembly eHealth resolution
The World Health Organization provides information at the Global Observatory on eHealth, as well as a global insight into eHealth developments
The European Commission provides Information on eHealth in Europe and some examples of good eHealth practice
More information is provided on NHS Connecting for Health
Related Articles
Impact of Patients' Judgment Skills on Asthma Self-Management: A Pilot Study
Londoño, Ana Maria Moreno
Schulz, Peter J.
Journal of Public Health Research
The majority of current health literacy tools assess functional skills including reading, writing, and numeracy. Although these tools have been able to underline the impact of such skills on individuals' health behaviour, there is a need for comprehensive measures to examine more advanced skills. The individual's ability to use health-related information considering his/her own health context, and judging positive and negative consequences of their decisions has been conceptualized as judgment skills. The present study used a newly developed judgment skills tool to explore asthma self-management practices.
Design and methods
Eighty asthma patients were recruited from medical offices during the year 2013. The questionnaire was self-administered and contained health literacy questions, the judgment skill tool, the Asthma Control Test, and several self-management questions.
Sixty-nine percent of participants had adequate health literacy, while 24% and 5% had marginal and inadequate levels, respectively. The high-judgment group referred more to their doctor when experiencing asthma problems t(76)=–2.18, P<0.032; complied more with the use of their control medicine t(77)=–3.24, P<0.002 and went more regularly to the doctor t(78)=–1.80, P<0.038 (one-tailed) than the low-judgment group.
The judgment skills tool can help identify asthma patients' health information use and reveal how this use may affect some self-management practices.
Significance for public healthPatients' health literacy has a great impact on their health behaviours and their health outcomes. Therefore, it has become more and more common to measure health literacy within the healthcare setting to determine the most effective approach to target patients. The measurement of asthma judgment skills contribute to a deeper understanding of patients' asthma self-management in crucial topics for asthma control, and have the advantage of assessing the specific abilities needed for this particular condition, which in turn benefits the translation of the findings from the use of this tool into strategies that directly tackle the needs of asthma patients.
health literacy; judgment skills; asthma self-management; pilot study
Related Articles
What Do Health Literacy and Cultural Competence Have in Common? Calling for a Collaborative Pedagogy
Lie, Désirée
Carter-Pokras, Olivia
Braun, Bonnie
Coleman, Cliff
Journal of health communication
2012;17(0 3):13-22.
Limited health literacy is recognized as contributing to racial/ethnic and other health disparities through mechanisms of poor understanding and adherence, and limited access to health care. Recent studies have focused on interventions to address literacy gaps between patients and healthcare providers, focusing on communication techniques and redefining the responsibility for closing gaps. Cultural differences between patient and provider, if left unaddressed, have been shown to contribute to poor health outcomes through misunderstanding, value conflicts and disparate concepts of health and illness. The dual challenges of limited health literacy and cultural differences are likely to increase with an expanding, increasingly diverse and older population. There is evidence that training providers to attend to both issues can reduce medical errors, improve adherence, patient-provider-family communication and outcomes of care at both individual and population levels. The two fields continue to have separate trajectories, vocabularies and research agendas, competing for limited curricular resources. We present a conceptual framework for health professions education that attends simultaneously to limited health literacy and cultural differences as a coherent way forward in training culturally competent providers with a common skill-set to deliver patient-centered care that focuses on health disparities reduction.
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An oral health literacy intervention for Indigenous adults in a rural setting in Australia
Parker, Eleanor J
Misan, Gary
Chong, Alwin
Mills, Helen
Roberts-Thomson, Kaye
Horowitz, Alice M
Jamieson, Lisa M
BMC Public Health
Indigenous Australians suffer substantially poorer oral health than their non-Indigenous counterparts and new approaches are needed to address these disparities. Previous work in Port Augusta, South Australia, a regional town with a large Indigenous community, revealed associations between low oral health literacy scores and self-reported oral health outcomes. This study aims to determine if implementation of a functional, context-specific oral health literacy intervention improves oral health literacy-related outcomes measured by use of dental services, and assessment of oral health knowledge, oral health self-care and oral health- related self-efficacy.
This is a randomised controlled trial (RCT) that utilises a delayed intervention design. Participants are Indigenous adults, aged 18 years and older, who plan to reside in Port Augusta or a nearby community for the next two years. The intervention group will receive the intervention from the outset of the study while the control group will be offered the intervention 12 months following their enrolment in the study. The intervention consists of a series of five culturally sensitive, oral health education workshops delivered over a 12 month period by Indigenous project officers. Workshops consist of presentations, hands-on activities, interactive displays, group discussions and role plays. The themes addressed in the workshops are underpinned by oral health literacy concepts, and incorporate oral health-related self-efficacy, oral health-related fatalism, oral health knowledge, access to dental care and rights and entitlements as a patient. Data will be collected through a self-report questionnaire at baseline, at 12 months and at 24 months. The primary outcome measure is oral health literacy. Secondary outcome measures include oral health knowledge, oral health self-care, use of dental services, oral health-related self-efficacy and oral health-related fatalism.
This study uses a functional, context-specific oral health literacy intervention to improve oral health literacy-related outcomes amongst rural-dwelling Indigenous adults. Outcomes of this study will have implications for policy and planning by providing evidence for the effectiveness of such interventions as well as provide a model for working with Indigenous communities.
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A Transdiagnostic Community-Based Mental Health Treatment for Comorbid Disorders: Development and Outcomes of a Randomized Controlled Trial among Burmese Refugees in Thailand
Bolton, Paul
Lee, Catherine
Haroz, Emily E.
Murray, Laura
Dorsey, Shannon
Robinson, Courtland
Ugueto, Ana M.
Bass, Judith
PLoS Medicine
In a randomized controlled trial, Paul Bolton and colleagues investigate whether a transdiagnostic community-based intervention is effective for improving mental health symptoms among Burmese refugees in Thailand.
Please see later in the article for the Editors' Summary
Existing studies of mental health interventions in low-resource settings have employed highly structured interventions delivered by non-professionals that typically do not vary by client. Given high comorbidity among mental health problems and implementation challenges with scaling up multiple structured evidence-based treatments (EBTs), a transdiagnostic treatment could provide an additional option for approaching community-based treatment of mental health problems. Our objective was to test such an approach specifically designed for flexible treatments of varying and comorbid disorders among trauma survivors in a low-resource setting.
Methods and Findings
We conducted a single-blinded, wait-list randomized controlled trial of a newly developed transdiagnostic psychotherapy, Common Elements Treatment Approach (CETA), for low-resource settings, compared with wait-list control (WLC). CETA was delivered by lay workers to Burmese survivors of imprisonment, torture, and related traumas, with flexibility based on client presentation. Eligible participants reported trauma exposure and met severity criteria for depression and/or posttraumatic stress (PTS). Participants were randomly assigned to CETA (n = 182) or WLC (n = 165). Outcomes were assessed by interviewers blinded to participant allocation using locally adapted standard measures of depression and PTS (primary outcomes) and functional impairment, anxiety symptoms, aggression, and alcohol use (secondary outcomes). Primary analysis was intent-to-treat (n = 347), including 73 participants lost to follow-up. CETA participants experienced significantly greater reductions of baseline symptoms across all outcomes with the exception of alcohol use (alcohol use analysis was confined to problem drinkers). The difference in mean change from pre-intervention to post-intervention between intervention and control groups was −0.49 (95% CI: −0.59, −0.40) for depression, −0.43 (95% CI: −0.51, −0.35) for PTS, −0.42 (95% CI: −0.58, −0.27) for functional impairment, −0.48 (95% CI: −0.61, −0.34) for anxiety, −0.24 (95% CI: −0.34, −0.15) for aggression, and −0.03 (95% CI: −0.44, 0.50) for alcohol use. This corresponds to a 77% reduction in mean baseline depression score among CETA participants compared to a 40% reduction among controls, with respective values for the other outcomes of 76% and 41% for anxiety, 75% and 37% for PTS, 67% and 22% for functional impairment, and 71% and 32% for aggression. Effect sizes (Cohen's d) were large for depression (d = 1.16) and PTS (d = 1.19); moderate for impaired function (d = 0.63), anxiety (d = 0.79), and aggression (d = 0.58); and none for alcohol use. There were no adverse events. Limitations of the study include the lack of long-term follow-up, non-blinding of service providers and participants, and no placebo or active comparison intervention.
CETA provided by lay counselors was highly effective across disorders among trauma survivors compared to WLCs. These results support the further development and testing of transdiagnostic approaches as possible treatment options alongside existing EBTs.
Trial registration
ClinicalTrials.gov NCT01459068
Please see later in the article for the Editors' Summary
Editors' Summary
Worldwide, one in four people will experience a mental health disorder at some time during their life. Although many evidence-based treatments (EBTs), most involving some sort of cognitive behavioral therapy (talking therapies that help people manage their mental health problems by changing the way they think and behave), are now available, many people with mental health disorders never receive any treatment for their condition. The situation is particularly bad for people living in low-resource settings, where a delivery model for EBTs based on referral to mental health professionals is problematic given that mental health professionals are scarce. To facilitate widespread access to mental health care among poor and/or rural populations in low-resource settings, EBTs need to be deliverable at the primary or community level by non-professionals. Moreover, because there is a large burden of trauma-related mental health disorders in low-resource settings and because trauma increases the risk of multiple mental health problems, treatment options that address comorbid (coexisting) mental health problems in low-resource settings are badly needed.
Why Was This Study Done?
One possible solution to the problem of delivering EBTs for comorbid mental health disorders in low-resource settings is "transdiagnostic" treatment. Many mental health EBTs for different disorders share common components. Transdiagnostic treatments recognize these facts and apply these common components to a range of disorders rather than creating a different structured treatment for each diagnosis. The Common Elements Treatment Approach (CETA), for example, trains counselors in a range of components that are similar across EBTs and teaches counselors how to choose components, their order, and dose, based on their client's problems. This flexible approach, which was designed for delivery by non-professional providers in low-resource settings, provides counselors with the skills needed to treat depression, anxiety, and posttraumatic stress—three trauma-related mental health disorders. In this randomized controlled trial, the researchers investigate the use of CETA among Burmese refugees living in Thailand, many of whom are survivors of decades-long harsh military rule in Myanmar. A randomized controlled trial compares the outcomes of individuals chosen to receive different interventions through the play of chance.
What Did the Researchers Do and Find?
The researchers assigned Burmese survivors or witnesses of imprisonment, torture, and related traumas who met symptom criteria for significant depression and/or posttraumatic stress to either the CETA or wait-list control arm of their trial. Lay counselors treated the participants in the CETA arm by delivering CETA components—for example, "psychoeducation" (which teaches clients that their symptoms are normal and experienced by many people) and "cognitive coping" (which helps clients understand that how they think about an event can impact their feelings and behavior)—chosen to reflect the client's priority problems at presentation. Participants in the control arm received regular calls from the trial coordinator to check on their safety but no other intervention. Participants in the CETA arm experienced greater reductions of baseline symptoms of depression, posttraumatic stress, anxiety, and aggression than participants in the control arm. For example, there was a 77% reduction in the average depression score from before the intervention to after the intervention among participants in the CETA arm, but only a 40% reduction in the depression score among participants in the control arm. Importantly, the effect size of CETA (a statistical measure that quantifies the importance of the difference between two groups) was large for depression and posttraumatic stress, the primary outcomes of the trial. That is, compared to no treatment, CETA had a large effect on the symptoms of depression and posttraumatic stress experienced by the trial participants.
What Do These Findings Mean?
These findings suggest that, among Burmese survivors and witnesses of torture and other trauma living in Thailand, CETA delivered by lay counselors was a highly effective treatment for comorbid mental disorders compared to no treatment (the wait-list control). These findings may not be generalizable to other low-resource settings, they provide no information about long-term outcomes, and they do not identify which aspects of CETA were responsible for symptom improvement or explain the improvements seen among the control participants. Given that the study compared CETA to no treatment rather than a placebo (dummy) or active comparison intervention, it is not possible to conclude that CETA works better that existing treatments. Nevertheless, these findings support the continued development and assessment of transdiagnostic approaches for the treatment of mental health disorders in low-resource settings where treatment access and comorbid mental health disorders are important challenges.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001757.
The World Health Organization provides background information about mental health
The US National Institute of Mental Health provides information about a range of mental health disorders and about cognitive behavioral therapy
The UK National Health Service Choices website has information about cognitive behavioral therapy, including some personal stories and links to other related mental health resources on the Choices website
A short introduction to transdiagnosis and CETA written by one of the trial authors is available
Information about this trial is available on the ClinicalTrials.gov website
The UN Refugee Agency provides information about Burmese (Myanmar) refugees in Thailand
Related Articles
Teaching critical health literacy in the US as a means to action on the social determinants of health
Mogford, Elizabeth
Gould, Linn
DeVoght, Andra
Health Promotion International
In spite of improvements in global health over the 20th century, health inequities are increasing. Mounting evidence suggests that reducing health inequities requires taking action on the social determinants of health (SDOH), which include income, education, employment, political empowerment and other factors. This paper introduces an alternative health education curriculum, developed by the US-based non-profit organization Just Health Action, which teaches critical health literacy as a step towards empowering people to achieve health equity. Critical health literacy is defined as an individual's understanding of the SDOH combined with the skills to take action at both the individual and the community level. Prior to describing our curricular framework, we connect the recommendations of the World Health Organization Commission on the SDOH with the objectives of the Ottawa Charter for Health Promotion by arguing that achieving them is reliant on critical health literacy. Then we describe our four-part curricular framework for teaching critical health literacy. Part 1, Knowledge, focuses on teaching the SDOH and the paradigm of health as a human right. Part 2, Compass, refers to activities that help students find their own direction as a social change agent. Part 3, Skills, refers to teaching specific advocacy tools and strategies. Part 4, Action, refers to the development and implementation of an action intended to increase health equity by addressing the SDOH. We describe activities that we use to motivate, engage and empower students to take action on the SDOH and provide examples of advocacy skills students have learned and actions they have implemented.
social determinants of health; health equity; advocacy; health education
Related Articles
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors
Ontario Health Technology Assessment Series
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry's newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person's transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site, http://www.health.gov.on.ca/english/providers/program/mas/mas_about.html, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
To assess the effectiveness of behavioural interventions for the treatment and management of urinary incontinence (UI) in community-dwelling seniors.
Clinical Need: Target Population and Condition
Urinary incontinence defined as "the complaint of any involuntary leakage of urine" was identified as 1 of the key predictors in a senior's transition from independent community living to admission to a long-term care (LTC) home. Urinary incontinence is a health problem that affects a substantial proportion of Ontario's community-dwelling seniors (and indirectly affects caregivers), impacting their health, functioning, well-being and quality of life. Based on Canadian studies, prevalence estimates range from 9% to 30% for senior men and nearly double from 19% to 55% for senior women. The direct and indirect costs associated with UI are substantial. It is estimated that the total annual costs in Canada are $1.5 billion (Cdn), and that each year a senior living at home will spend $1,000 to $1,500 on incontinence supplies.
Interventions to treat and manage UI can be classified into broad categories which include lifestyle modification, behavioural techniques, medications, devices (e.g., continence pessaries), surgical interventions and adjunctive measures (e.g., absorbent products).
The focus of this review is behavioural interventions, since they are commonly the first line of treatment considered in seniors given that they are the least invasive options with no reported side effects, do not limit future treatment options, and can be applied in combination with other therapies. In addition, many seniors would not be ideal candidates for other types of interventions involving more risk, such as surgical measures.
Note: It is recognized that the terms "senior" and "elderly" carry a range of meanings for different audiences; this report generally uses the former, but the terms are treated here as essentially interchangeable.
Description of Technology/Therapy
Behavioural interventions can be divided into 2 categories according to the target population: caregiver-dependent techniques and patient-directed techniques. Caregiver-dependent techniques (also known as toileting assistance) are targeted at medically complex, frail individuals living at home with the assistance of a caregiver, who tends to be a family member. These seniors may also have cognitive deficits and/or motor deficits. A health care professional trains the senior's caregiver to deliver an intervention such as prompted voiding, habit retraining, or timed voiding. The health care professional who trains the caregiver is commonly a nurse or a nurse with advanced training in the management of UI, such as a nurse continence advisor (NCA) or a clinical nurse specialist (CNS).
The second category of behavioural interventions consists of patient-directed techniques targeted towards mobile, motivated seniors. Seniors in this population are cognitively able, free from any major physical deficits, and motivated to regain and/or improve their continence. A nurse or a nurse with advanced training in UI management, such as an NCA or CNS, delivers the patient-directed techniques. These are often provided as multicomponent interventions including a combination of bladder training techniques, pelvic floor muscle training (PFMT), education on bladder control strategies, and self-monitoring. Pelvic floor muscle training, defined as a program of repeated pelvic floor muscle contractions taught and supervised by a health care professional, may be employed as part of a multicomponent intervention or in isolation.
Education is a large component of both caregiver-dependent and patient-directed behavioural interventions, and patient and/or caregiver involvement as well as continued practice strongly affect the success of treatment. Incontinence products, which include a large variety of pads and devices for effective containment of urine, may be used in conjunction with behavioural techniques at any point in the patient's management.
Evidence-Based Analysis Methods
A comprehensive search strategy was used to identify systematic reviews and randomized controlled trials that examined the effectiveness, safety, and cost-effectiveness of caregiver-dependent and patient-directed behavioural interventions for the treatment of UI in community-dwelling seniors (see Appendix 1).
Research Questions
Are caregiver-dependent behavioural interventions effective in improving UI in medically complex, frail community-dwelling seniors with/without cognitive deficits and/or motor deficits?
Are patient-directed behavioural interventions effective in improving UI in mobile, motivated community-dwelling seniors?
Are behavioural interventions delivered by NCAs or CNSs in a clinic setting effective in improving incontinence outcomes in community-dwelling seniors?
Assessment of Quality of Evidence
The quality of the evidence was assessed as high, moderate, low, or very low according to the GRADE methodology and GRADE Working Group. As per GRADE the following definitions apply:
Summary of Findings
Executive Summary Table 1 summarizes the results of the analysis.
The available evidence was limited by considerable variation in study populations and in the type and severity of UI for studies examining both caregiver-directed and patient-directed interventions. The UI literature frequently is limited to reporting subjective outcome measures such as patient observations and symptoms. The primary outcome of interest, admission to a LTC home, was not reported in the UI literature. The number of eligible studies was low, and there were limited data on long-term follow-up.
Summary of Evidence on Behavioural Interventions for the Treatment of Urinary Incontinence in Community-Dwelling Seniors
Prompted voiding
Habit retraining
Timed voiding
Bladder training
PFMT (with or without biofeedback)
Bladder control strategies
CI refers to confidence interval; CNS, clinical nurse specialist; NCA, nurse continence advisor; PFMT, pelvic floor muscle training; RCT, randomized controlled trial; WMD, weighted mean difference; UI, urinary incontinence.
Economic Analysis
A budget impact analysis was conducted to forecast costs for caregiver-dependent and patient-directed multicomponent behavioural techniques delivered by NCAs, and PFMT alone delivered by physiotherapists. All costs are reported in 2008 Canadian dollars. Based on epidemiological data, published medical literature and clinical expert opinion, the annual cost of caregiver-dependent behavioural techniques was estimated to be $9.2 M, while the annual costs of patient-directed behavioural techniques delivered by either an NCA or physiotherapist were estimated to be $25.5 M and $36.1 M, respectively. Estimates will vary if the underlying assumptions are changed.
Currently, the province of Ontario absorbs the cost of NCAs (available through the 42 Community Care Access Centres across the province) in the home setting. The 2007 Incontinence Care in the Community Report estimated that the total cost being absorbed by the public system of providing continence care in the home is $19.5 M in Ontario. This cost estimate included resources such as personnel, communication with physicians, record keeping and product costs. Clinic costs were not included in this estimation because currently these come out of the global budget of the respective hospital and very few continence clinics actually exist in the province. The budget impact analysis factored in a cost for the clinic setting, assuming that the public system would absorb the cost with this new model of community care.
Considerations for Ontario Health System
An expert panel on aging in the community met on 3 occasions from January to May 2008, and in part, discussed treatment of UI in seniors in Ontario with a focus on caregiver-dependent and patient-directed behavioural interventions. In particular, the panel discussed how treatment for UI is made available to seniors in Ontario and who provides the service. Some of the major themes arising from the discussions included:
Services/interventions that currently exist in Ontario offering behavioural interventions to treat UI are not consistent. There is a lack of consistency in how seniors access services for treatment of UI, who manages patients and what treatment patients receive.
Help-seeking behaviours are important to consider when designing optimal service delivery methods.
There is considerable social stigma associated with UI and therefore there is a need for public education and an awareness campaign.
The cost of incontinent supplies and the availability of NCAs were highlighted.
There is moderate-quality evidence that the following interventions are effective in improving UI in mobile motivated seniors:
Multicomponent behavioural interventions including a combination of bladder training techniques, PFMT (with or without biofeedback), education on bladder control strategies and self-monitoring techniques.
Pelvic floor muscle training alone.
There is moderate quality evidence that when behavioural interventions are led by NCAs or CNSs in a clinic setting, they are effective in improving UI in seniors.
There is limited low-quality evidence that prompted voiding may be effective in medically complex, frail seniors with motivated caregivers.
There is insufficient evidence for the following interventions in medically complex, frail seniors with motivated caregivers:
habit retraining, and
timed voiding.
Related Articles
Facilitating the Recruitment of Minority Ethnic People into Research: Qualitative Case Study of South Asians and Asthma
Sheikh, Aziz
Halani, Laila
Bhopal, Raj
Netuveli, Gopalakrishnan
Partridge, Martyn R.
Car, Josip
Griffiths, Chris
Levy, Mark
PLoS Medicine
Aziz Sheikh and colleagues report on a qualitative study in the US and the UK to investigate ways to bolster recruitment of South Asians into asthma studies, including making inclusion of diverse populations mandatory.
There is international interest in enhancing recruitment of minority ethnic people into research, particularly in disease areas with substantial ethnic inequalities. A recent systematic review and meta-analysis found that UK South Asians are at three times increased risk of hospitalisation for asthma when compared to white Europeans. US asthma trials are far more likely to report enrolling minority ethnic people into studies than those conducted in Europe. We investigated approaches to bolster recruitment of South Asians into UK asthma studies through qualitative research with US and UK researchers, and UK community leaders.
Methods and Findings
Interviews were conducted with 36 researchers (19 UK and 17 US) from diverse disciplinary backgrounds and ten community leaders from a range of ethnic, religious, and linguistic backgrounds, followed by self-completion questionnaires. Interviews were digitally recorded, translated where necessary, and transcribed. The Framework approach was used for analysis. Barriers to ethnic minority participation revolved around five key themes: (i) researchers' own attitudes, which ranged from empathy to antipathy to (in a minority of cases) misgivings about the scientific importance of the question under study; (ii) stereotypes and prejudices about the difficulties in engaging with minority ethnic populations; (iii) the logistical challenges posed by language, cultural differences, and research costs set against the need to demonstrate value for money; (iv) the unique contexts of the two countries; and (v) poorly developed understanding amongst some minority ethnic leaders of what research entails and aims to achieve. US researchers were considerably more positive than their UK counterparts about the importance and logistics of including ethnic minorities, which appeared to a large extent to reflect the longer-term impact of the National Institutes of Health's requirement to include minority ethnic people.
Most researchers and community leaders view the broadening of participation in research as important and are reasonably optimistic about the feasibility of recruiting South Asians into asthma studies provided that the barriers can be overcome. Suggested strategies for improving recruitment in the UK included a considerably improved support structure to provide academics with essential contextual information (e.g., languages of particular importance and contact with local gatekeepers), and the need to ensure that care is taken to engage with the minority ethnic communities in ways that are both culturally appropriate and sustainable; ensuring reciprocal benefits was seen as one key way of avoiding gatekeeper fatigue. Although voluntary measures to encourage researchers may have some impact, greater impact might be achieved if UK funding bodies followed the lead of the US National Institutes of Health requiring recruitment of ethnic minorities. Such a move is, however, likely in the short- to medium-term, to prove unpopular with many UK academics because of the added "hassle" factor in engaging with more diverse populations than many have hitherto been accustomed to.
Please see later in the article for the Editors' Summary
Editors' Summary
In an ideal world, everyone would have the same access to health care and the same health outcomes (responses to health interventions). However, health inequalities—gaps in health care and in health between different parts of the population—exist in many countries. In particular, people belonging to ethnic minorities in the UK, the US, and elsewhere have poorer health outcomes for several conditions than people belonging to the ethnic majority (ethnicity is defined by social characteristics such as cultural tradition or national origin). For example, in the UK, people whose ancestors came from the Indian subcontinent (also known as South Asians and comprising in the main of people of Indian, Pakistani, and Bangladeshi origin) are three times as likely to be admitted to hospital for asthma as white Europeans. The reasons underpinning ethnic health inequalities are complex. Some inequalities may reflect intrinsic differences between groups of people—some ethnic minorities may inherit genes that alter their susceptibility to a specific disease. Other ethnic health inequalities may arise because of differences in socioeconomic status or because different cultural traditions affect the uptake of health care services.
Why Was This Study Done?
Minority ethnic groups are often under-represented in health research, which could limit the generalizability of research findings. That is, an asthma treatment that works well in a trial where all the participants are white Europeans might not be suitable for South Asians. Clinicians might nevertheless use the treatment in all their patients irrespective of their ethnicity and thus inadvertently increase ethnic health inequality. So, how can ethnic minorities be encouraged to enroll into research studies? In this qualitative study, the investigators try to answer this question by talking to US and UK asthma researchers and UK community leaders about how they feel about enrolling ethnic minorities into research studies. The investigators chose to compare the feelings of US and UK asthma researchers because minority ethnic people are more likely to enroll into US asthma studies than into UK studies, possibly because the US National Institute of Health's (NIH) Revitalization Act 1993 mandates that all NIH-funded clinical research must include people from ethnic minority groups; there is no similar mandatory policy in the UK.
What Did the Researchers Do and Find?
The investigators interviewed 16 UK and 17 US asthma researchers and three UK social researchers with experience of working with ethnic minorities. They also interviewed ten community leaders from diverse ethnic, religious and linguistic backgrounds. They then analyzed the interviews using the "Framework" approach, an analytical method in which qualitative data are classified and organized according to key themes and then interpreted. By comparing the data from the UK and US researchers, the investigators identified several barriers to ethnic minority participation in health research including: the attitudes of researchers towards the scientific importance of recruiting ethnic minority people into health research studies; prejudices about the difficulties of including ethnic minorities in health research; and the logistical challenges posed by language and cultural differences. In general, the US researchers were more positive than their UK counterparts about the importance and logistics of including ethnic minorities in health research. Finally, the investigators found that some community leaders had a poor understanding of what research entails and about its aims.
What Do These Findings Mean?
These findings reveal a large gap between US and UK researchers in terms of policy, attitudes, practices, and experiences in relation to including ethnic minorities in asthma research. However, they also suggest that most UK researchers and community leaders believe that it is both important and feasible to increase the participation of South Asians in asthma studies. Although some of these findings may have been affected by the study participants sometimes feeling obliged to give "politically correct" answers, these findings are likely to be generalizable to other diseases and to other parts of Europe. Given their findings, the researchers warn that a voluntary code of practice that encourages the recruitment of ethnic minority people into health research studies is unlikely to be successful. Instead, they suggest, the best way to increase the representation of ethnic minority people in health research in the UK might be to follow the US lead and introduce a policy that requires their inclusion in such research.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000148.
Families USA, a US nonprofit organization that campaigns for high-quality, affordable health care for all Americans, has information about many aspects of minority health in the US, including an interactive game about minority health issues
The US Agency for Healthcare Research and Quality has a section on minority health
The UK Department of Health provides information on health inequalities and a recent report on the experiences of patients in Black and minority ethnic groups
The UK Parliamentary Office of Science and Technology also has a short article on ethnicity and health
Information on the NIH Revitalization Act 1993 is available
NHS Evidences Ethnicity and Health has a variety of policy, clinical, and research resources on ethnicity and health
Related Articles
eHEALS: The eHealth Literacy Scale
Norman, Cameron D
Skinner, Harvey A
Journal of Medical Internet Research
Electronic health resources are helpful only when people are able to use them, yet there remain few tools available to assess consumers' capacity for engaging in eHealth. Over 40% of US and Canadian adults have low basic literacy levels, suggesting that eHealth resources are likely to be inaccessible to large segments of the population. Using information technology for health requires eHealth literacy—the ability to read, use computers, search for information, understand health information, and put it into context. The eHealth Literacy Scale (eHEALS) was designed (1) to assess consumers' perceived skills at using information technology for health and (2) to aid in determining the fit between eHealth programs and consumers.
The eHEALS is an 8-item measure of eHealth literacy developed to measure consumers' combined knowledge, comfort, and perceived skills at finding, evaluating, and applying electronic health information to health problems. The objective of the study was to psychometrically evaluate the properties of the eHEALS within a population context. A youth population was chosen as the focus for the initial development primarily because they have high levels of eHealth use and familiarity with information technology tools.
Data were collected at baseline, post-intervention, and 3- and 6-month follow-up using control group data as part of a single session, randomized intervention trial evaluating Web-based eHealth programs. Scale reliability was tested using item analysis for internal consistency (coefficient alpha) and test-retest reliability estimates. Principal components factor analysis was used to determine the theoretical fit of the measures with the data.
A total of 664 participants (370 boys; 294 girls) aged 13 to 21 (mean = 14.95; SD = 1.24) completed the eHEALS at four time points over 6 months. Item analysis was performed on the 8-item scale at baseline, producing a tight fitting scale with α = .88. Item-scale correlations ranged from r = .51 to .76. Test-retest reliability showed modest stability over time from baseline to 6-month follow-up (r = .68 to .40). Principal components analysis produced a single factor solution (56% of variance). Factor loadings ranged from .60 to .84 among the 8 items.
The eHEALS reliably and consistently captures the eHealth literacy concept in repeated administrations, showing promise as tool for assessing consumer comfort and skill in using information technology for health. Within a clinical environment, the eHEALS has the potential to serve as a means of identifying those who may or may not benefit from referrals to an eHealth intervention or resource. Further research needs to examine the applicability of the eHEALS to other populations and settings while exploring the relationship between eHealth literacy and health care outcomes.
Internet; literacy; public health; psychometrics; quantitative evaluation
Related Articles
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