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1.  Eurocan plus report: feasibility study for coordination of national cancer research activities 
Summary
The EUROCAN+PLUS Project, called for by the European Parliament, was launched in October 2005 as a feasibility study for coordination of national cancer research activities in Europe. Over the course of the next two years, the Project process organized over 60 large meetings and countless smaller meetings that gathered in total over a thousand people, the largest Europe–wide consultation ever conducted in the field of cancer research.
Despite a strong tradition in biomedical science in Europe, fragmentation and lack of sustainability remain formidable challenges for implementing innovative cancer research and cancer care improvement. There is an enormous duplication of research effort in the Member States, which wastes time, wastes money and severely limits the total intellectual concentration on the wide cancer problem. There is a striking lack of communication between some of the biggest actors on the European scene, and there are palpable tensions between funders and those researchers seeking funds.
It is essential to include the patients’ voice in the establishment of priority areas in cancer research at the present time. The necessity to have dialogue between funders and scientists to establish the best mechanisms to meet the needs of the entire community is evident. A top priority should be the development of translational research (in its widest form), leading to the development of effective and innovative cancer treatments and preventive strategies. Translational research ranges from bench–to–bedside innovative cancer therapies and extends to include bringing about changes in population behaviours when a risk factor is established.
The EUROCAN+PLUS Project recommends the creation of a small, permanent and independent European Cancer Initiative (ECI). This should be a model structure and was widely supported at both General Assemblies of the project. The ECI should assume responsibility for stimulating innovative cancer research and facilitating processes, becoming the common voice of the cancer research community and serving as an interface between the cancer research community and European citizens, patients’ organizations, European institutions, Member States, industry and small and medium enterprises (SMEs), putting into practice solutions aimed at alleviating barriers to collaboration and coordination of cancer research activities in the European Union, and dealing with legal and regulatory issues. The development of an effective ECI will require time, but this entity should be established immediately. As an initial step, coordination efforts should be directed towards the creation of a platform on translational research that could encompass (1) coordination between basic, clinical and epidemiological research; (2) formal agreements of co–operation between comprehensive cancer centres and basic research laboratories throughout Europe and (3) networking between funding bodies at the European level.
The European Parliament and its instruments have had a major influence in cancer control in Europe, notably in tobacco control and in the implementation of effective population–based screening. To make further progress there is a need for novelty and innovation in cancer research and prevention in Europe, and having a platform such as the ECI, where those involved in all aspects of cancer research can meet, discuss and interact, is a decisive development for Europe.
Executive Summary
Cancer is one of the biggest public health crises facing Europe in the 21st century—one for which Europe is currently not prepared nor preparing itself. Cancer is a major cause of death in Europe with two million casualties and three million new cases diagnosed annually, and the situation is set to worsen as the population ages.
These facts led the European Parliament, through the Research Directorate-General of the European Commission, to call for initiatives for better coordination of cancer research efforts in the European Union. The EUROCAN+PLUS Project was launched in October 2005 as a feasibility study for coordination of national cancer research activities. Over the course of the next two years, the Project process organized over 60 large meetings and countless smaller meetings that gathered in total over a thousand people. In this respect, the Project became the largest Europe-wide consultation ever conducted in the field of cancer research, implicating researchers, cancer centres and hospitals, administrators, healthcare professionals, funding agencies, industry, patients’ organizations and patients.
The Project first identified barriers impeding research and collaboration in research in Europe. Despite a strong tradition in biomedical science in Europe, fragmentation and lack of sustainability remain the formidable challenges for implementing innovative cancer research and cancer care improvement. There is an enormous duplication of research effort in the Member States, which wastes time, wastes money and severely limits the total intellectual concentration on the wide cancer problem. There is a striking lack of communication between some of the biggest actors on the European scene, and there are palpable tensions between funders and those researchers seeking funds.
In addition, there is a shortage of leadership, a multiplicity of institutions each focusing on its own agenda, sub–optimal contact with industry, inadequate training, non–existent career paths, low personnel mobility in research especially among clinicians and inefficient funding—all conspiring against efficient collaboration in cancer care and research. European cancer research today does not have a functional translational research continuum, that is the process that exploits biomedical research innovations and converts them into prevention methods, diagnostic tools and therapies. Moreover, epidemiological research is not integrated with other types of cancer research, and the implementation of the European Directives on Clinical Trials 1 and on Personal Data Protection 2 has further slowed the innovation process in Europe. Furthermore, large inequalities in health and research exist between the EU–15 and the New Member States.
The picture is not entirely bleak, however, as the European cancer research scene presents several strengths, such as excellent basic research and clinical research and innovative etiological research that should be better exploited.
When considering recommendations, several priority dimensions had to be retained. It is essential that proposals include actions and recommendations that can benefit all Member States of the European Union and not just States with the elite centres. It is also essential to have a broader patient orientation to help provide the knowledge to establish cancer control possibilities when we exhaust what can be achieved by the implementation of current knowledge. It is vital that the actions proposed can contribute to the Lisbon Strategy to make Europe more innovative and competitive in (cancer) research.
The Project participants identified six areas for which consensus solutions should be implemented in order to obtain better coordination of cancer research activities. The required solutions are as follows. The proactive management of innovation, detection, facilitation of collaborations and maintenance of healthy competition within the European cancer research community.The establishment of an exchange portal of information for health professionals, patients and policy makers.The provision of guidance for translational and clinical research including the establishment of a translational research platform involving comprehensive cancer centres and cancer research centres.The coordination of calls and financial management of cancer research projects.The construction of a ‘one–stop shop’ as a contact interface between the industry, small and medium enterprises, scientists and other stakeholders.The support of greater involvement of healthcare professionals in translational research and multidisciplinary training.
In the course of the EUROCAN+PLUS consultative process, several key collaborative projects emerged between the various groups and institutes engaged in the consultation. There was a collaboration network established with Europe’s leading Comprehensive Cancer Centres; funding was awarded for a closer collaboration of Owners of Cancer Registries in Europe (EUROCOURSE); there was funding received from FP7 for an extensive network of leading Biological Resource Centres in Europe (BBMRI); a Working Group identified the special needs of Central, Eastern and South–eastern Europe and proposed a remedy (‘Warsaw Declaration’), and the concept of developing a one–stop shop for dealing with academia and industry including the Innovative Medicines Initiative (IMI) was discussed in detail.
Several other dimensions currently lacking were identified. There is an absolute necessity to include the patients’ voice in the establishment of priority areas in cancer research at the present time. It was a salutary lesson when it was recognized that all that is known about the quality of life of the cancer patient comes from the experience of a tiny proportion of cancer patients included in a few clinical trials. The necessity to have dialogue between funders and scientists to establish the best mechanisms to meet the needs of the entire community was evident. A top priority should be the development of translational research (in its widest form) and the development of effective and innovative cancer treatments and preventative strategies in the European Union. Translational research ranges from bench-to-bedside innovative cancer therapies and extends to include bringing about changes in population behaviours when a risk factor is established.
Having taken note of the barriers and the solutions and having examined relevant examples of existing European organizations in the field, it was agreed during the General Assembly of 19 November 2007 that the EUROCAN+PLUS Project had to recommend the creation of a small, permanent and neutral ECI. This should be a model structure and was widely supported at both General Assemblies of the project. The proposal is based on the successful model of the European Molecular Biology Organisation (EMBO), and its principal aims include providing a forum where researchers from all backgrounds and from all countries can meet with members of other specialities including patients, nurses, clinicians, funders and scientific administrators to develop priority programmes to make Europe more competitive in research and more focused on the cancer patient.
The ECI should assume responsibility for: stimulating innovative cancer research and facilitating processes;becoming the common voice of the cancer research community and serving as an interface between the cancer research community and European citizens, patients’ and organizations;European institutions, Member States, industry and small and medium enterprises;putting into practice the aforementioned solutions aimed at alleviating barriers and coordinating cancer research activities in the EU;dealing with legal and regulatory issues.
Solutions implemented through the ECI will lead to better coordination and collaboration throughout Europe, more efficient use of resources, an increase in Europe’s attractiveness to the biomedical industry and better quality of cancer research and education of health professionals.
The Project considered that European legal instruments currently available were inadequate for addressing many aspects of the barriers identified and for the implementation of effective, lasting solutions. Therefore, the legal environment that could shelter an idea like the ECI remains to be defined but should be done so as a priority. In this context, the initiative of the European Commission for a new legal entity for research infrastructure might be a step in this direction. The development of an effective ECI will require time, but this should be established immediately. As an initial step, coordination efforts should be directed towards the creation of a platform on translational research that could encompass: (1) coordination between basic, clinical and epidemiological research; (2) formal agreements of co-operation between comprehensive cancer centres and basic research laboratories throughout Europe; (3) networking between funding bodies at the European level. Another topic deserving immediate attention is the creation of a European database on cancer research projects and cancer research facilities.
Despite enormous progress in cancer control in Europe during the past two decades, there was an increase of 300,000 in the number of new cases of cancer diagnosed between 2004 and 2006. The European Parliament and its instruments have had a major influence in cancer control, notably in tobacco control and in the implementation of effective population–based screening. To make further progress there is a need for novelty and innovation in cancer research and prevention in Europe, and having a platform such as the ECI, where those involved in all aspects of cancer research can meet, discuss and interact, is a decisive development for Europe.
doi:10.3332/ecancer.2011.84
PMCID: PMC3234055  PMID: 22274749
2.  To Use or Not to Use 
Journal of General Internal Medicine  2006;21(Suppl 3):S11-S18.
BACKGROUND AND OBJECTIVE
Effects of advances in Department of Veterans Affairs (VA) women's health care on women veterans' health care decision making are unknown. Our objective was to determine why women veterans use or do not use VA health care.
DESIGN AND PARTICIPANTS
Cross-sectional survey of 2,174 women veteran VA users and VA-eligible nonusers throughout southern California and southern Nevada.
MEASUREMENTS
VA utilization, attitudes toward care, and socio-demographics.
RESULTS
Reasons cited for VA use included affordability (67.9%); women's health clinic (WHC) availability (58.8%); quality of care (54.8%); and convenience (47.9%). Reasons for choosing health care in non-VA settings included having insurance (71.0%); greater convenience of non-VA care (66.9%); lack of knowledge of VA eligibility and services (48.5%); and perceived better non-VA quality (34.5%). After adjustment for socio-demographics, health characteristics, and VA priority group, knowledge deficits about VA eligibility and services and perceived worse VA care quality predicted outside health care use. VA users were less likely than non-VA users to have after-hours access to nonemergency care, but more likely to receive both general and gender-related care from the same clinic or provider, to use a WHC for gender-related care, and to consider WHC availability very important.
CONCLUSIONS
Lack of information about VA, perceptions of VA quality, and inconvenience of VA care, are deterrents to VA use for many women veterans. VA WHCs may foster VA use. Educational campaigns are needed to fill the knowledge gap regarding women veterans' VA eligibility and advances in VA quality of care, while VA managers consider solutions to after-hours access barriers.
doi:10.1111/j.1525-1497.2006.00369.x
PMCID: PMC1513176  PMID: 16637939
women's health services; ambulatory care/utilization; hospitals; veterans/utilization; health services accessibility; decision making; choice behavior
3.  Integration of Women Veterans into VA Quality Improvement Research Efforts: What Researchers Need to Know 
Journal of General Internal Medicine  2010;25(Suppl 1):56-61.
The Department of Veterans Affairs (VA) and other federal agencies require funded researchers to include women in their studies. Historically, many researchers have indicated they will include women in proportion to their VA representation or pointed to their numerical minority as justification for exclusion. However, women’s participation in the military—currently 14% of active military—is rapidly changing veteran demographics, with women among the fastest growing segments of new VA users. These changes will require researchers to meet the challenge of finding ways to adequately represent women veterans for meaningful analysis. We describe women veterans’ health and health-care use, note how VA care is organized to meet their needs, report gender differences in quality, highlight national plans for women veterans’ quality improvement, and discuss VA women’s health research. We then discuss challenges and potential solutions for increasing representation of women veterans in VA research, including steps for implementation research.
doi:10.1007/s11606-009-1116-4
PMCID: PMC2806960  PMID: 20077153
quality improvement; disparities; implementation research; women’s health; veterans
4.  Research for better health: the Panamanian priority-setting experience and the need for a new process 
Background
Panama is, economically, the fastest growing country in Central America and is making efforts to improve management mechanisms for research and innovation. However, due to contextual factors, the Panamanian Health Research System is not well developed and is poorly coordinated with the Health System. Likewise, despite recent efforts to define a National Health Research Agenda, implementing this agenda and aligning it with Panamanians’ health needs remains difficult. This articles aims to review Panama’s experience in health research priority setting by analyzing the fairness of previous prioritization processes in order to promote an agreed-upon national agenda aligned with public health needs.
Methods
The three health research prioritization processes performed in Panama between 2006 and 2011 were analyzed based on the guidelines established by the four “Accountability for Reasonableness” principles, namely “relevance”, “publicity”, “revision”, and “enforcement”, which provide a framework for evaluating priority-setting fairness.
Results
The three health research priority-setting events performed in Panama during the reference period demonstrated a heterogeneous pattern of decision-making strategies, stakeholder group composition, and prioritization outcomes. None of the three analyzed events featured an open discussion process with the scientific community, health care providers, or civil society in order to reach consensus.
Conclusions
This investigation makes evident the lack of a strategy to encourage open discussion by the multiple stakeholders and interest groups that should be involved during the priority-setting process. The analysis reveals the need for a new priority-setting exercise that validates the National Agenda, promotes its implementation by the National Secretariat for Science, Technology and Innovation in conjunction with the Ministry of Health, and empowers multiple stakeholders; such an exercise would, in turn, favor the implementation of the agenda.
doi:10.1186/1478-4505-12-38
PMCID: PMC4137936  PMID: 25117661
Health research policy; Resources for research
5.  The Influence of Distance and Level of Care on Delivery Place in Rural Zambia: A Study of Linked National Data in a Geographic Information System 
PLoS Medicine  2011;8(1):e1000394.
Using linked national data in a geographic information system system, Sabine Gabrysch and colleagues investigate the effects of distance to care and level of care on women's use of health facilities for delivery in rural Zambia.
Background
Maternal and perinatal mortality could be reduced if all women delivered in settings where skilled attendants could provide emergency obstetric care (EmOC) if complications arise. Research on determinants of skilled attendance at delivery has focussed on household and individual factors, neglecting the influence of the health service environment, in part due to a lack of suitable data. The aim of this study was to quantify the effects of distance to care and level of care on women's use of health facilities for delivery in rural Zambia, and to compare their population impact to that of other important determinants.
Methods and Findings
Using a geographic information system (GIS), we linked national household data from the Zambian Demographic and Health Survey 2007 with national facility data from the Zambian Health Facility Census 2005 and calculated straight-line distances. Health facilities were classified by whether they provided comprehensive EmOC (CEmOC), basic EmOC (BEmOC), or limited or substandard services. Multivariable multilevel logistic regression analyses were performed to investigate the influence of distance to care and level of care on place of delivery (facility or home) for 3,682 rural births, controlling for a wide range of confounders. Only a third of rural Zambian births occurred at a health facility, and half of all births were to mothers living more than 25 km from a facility of BEmOC standard or better. As distance to the closest health facility doubled, the odds of facility delivery decreased by 29% (95% CI, 14%–40%). Independently, each step increase in level of care led to 26% higher odds of facility delivery (95% CI, 7%–48%). The population impact of poor geographic access to EmOC was at least of similar magnitude as that of low maternal education, household poverty, or lack of female autonomy.
Conclusions
Lack of geographic access to emergency obstetric care is a key factor explaining why most rural deliveries in Zambia still occur at home without skilled care. Addressing geographic and quality barriers is crucial to increase service use and to lower maternal and perinatal mortality. Linking datasets using GIS has great potential for future research and can help overcome the neglect of health system factors in research and policy.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Approximately 360,000 women die each year in pregnancy and childbirth, of which more than 200,000 in sub-Saharan Africa, where a woman's lifetime risk of dying during or following pregnancy remains as high as 1 in 31 (compared to 1 in 4,300 in the developed world). The target of Millennium Development Goal 5 is to reduce the maternal mortality ratio by three quarters by 2015. Most maternal and neonatal deaths in low-income countries could be prevented if all women delivered their babies in settings where skilled birth attendants (such as midwives) were available and could provide emergency obstetric care to both mothers and babies in case of complications. Yet every year roughly 50 million women give birth at home without skilled care.
Why was this study done?
The likelihood of a woman giving birth in a health facility under the care of a skilled birth attendant depends on many factors. These include characteristics of the mother and her family, such as education level and household wealth, and aspects of the health service environment—distance to the nearest health facility and the quality of care provided at that facility, for example. However, research to date has typically focused on household and individual factors, neglecting the influence of the health service environment on choice of delivery place, largely because suitable data was not available. In this study in rural Zambia, the researchers aimed to quantify the effects of the health service environment, namely distance to health care and the level of care provided, on pregnant women's use of health facilities for giving birth. To put these factors in context, the researchers compared the impact of distance to quality care on place of delivery to that of other important factors, such as poverty and education.
What did the researchers do and find?
Using a geographic information system (GIS), the researchers linked national household data (from the 2007 Zambia Demographic and Health Survey) with national facility data (from the 2005 Zambian Health Facility Census) and calculated straight-line distances between women's villages and health facilities. Health facilities were classified as providing comprehensive emergency obstetric care, basic emergency obstetric care, or limited or substandard services by using reported capability to perform a certain number of the eight emergency obstetric care signal functions: injectable antibiotics, injectable oxytocics, injectable anticonvulsants, manual removal of placenta, manual removal of retained products, assisted vaginal delivery, cesarean section, and blood transfusion, as well as criteria on staffing, opening hours and referral capacity. The researchers used data from 3,682 rural births and multivariable multilevel logistic regression analyses to investigate whether distance to, and level of care at the closest delivery facility influence place of delivery (health facility or home), keeping other influential factors constant.
The researchers found that only a third of births in rural Zambia occurred at a health facility, and half of all mothers who gave birth lived more than 25 km from a health facility that provided basic emergency obstetric services. As distance to the closest health facility doubled, the odds of a women giving birth in a health facility decreased by 29%. Independently, each step increase in the level of emergency obstetric care provided at the closest delivery facility led to an increased likelihood (26% higher odds) of a woman delivering her baby at a facility. The researchers estimated that the impact of poor geographic access to emergency obstetric services was of similar magnitude as that of low maternal education, household poverty, or lack of female autonomy.
What do these findings mean?
The results of this study suggest that poor geographic access to emergency obstetric care is a key factor in explaining why most women in rural Zambia still deliver their babies at home without skilled care. Therefore, in order to increase the number of women delivering in health facilities and thus reduce maternal and neonatal mortality, it is crucial to address the geographic and quality barriers to delivery service use. Furthermore, the methodology used in this study—linking datasets using GIS— has great potential for future research as it can help explore the influence of health system factors also for other health problems.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000394.
Information about emergency obstetric care is provided by the United Nations Population Fund (UNFPA)
Various topics on maternal health are presented by WHO, WHO Regional Office Africa, by UNPFA, and UNICEF
WHO offers detailed information about MDG5
Family Care International offers more information about maternal and neonatal health
The Averting Maternal Death and Disability program (AMDD) provides information on needs assessments of emergency obstetric and newborn care
Countdown to 2015 tracks progress in maternal, newborn, and child survival
WHO provides free online viewing of BBC Fight for Life videos describing delivery experiences in different countries
doi:10.1371/journal.pmed.1000394
PMCID: PMC3026699  PMID: 21283606
6.  Military Sexual Trauma Among Homeless Veterans 
Journal of General Internal Medicine  2013;28(Suppl 2):536-541.
ABSTRACT
BACKGROUND
Military sexual trauma (MST) is the Veteran Health Administration’s (VHA) term for sexual assault and/or sexual harassment that occurs during military service. The experience of MST is associated with a variety of mental health conditions. Preliminary research suggests that MST may be associated with homelessness among female Veterans, although to date MST has not been examined in a national study of both female and male homeless Veterans.
OBJECTIVE
To estimate the prevalence of MST, examine the association between MST and mental health conditions, and describe mental health utilization among homeless women and men.
DESIGN AND PARTICIPANTS
National, cross-sectional study of 126,598 homeless Veterans who used VHA outpatient care in fiscal year 2010.
MAIN MEASURES
All variables were obtained from VHA administrative databases, including MST screening status, ICD-9-CM codes to determine mental health diagnoses, and VHA utilization.
KEY RESULTS
Of homeless Veterans in VHA, 39.7 % of females and 3.3 % of males experienced MST. Homeless Veterans who experienced MST demonstrated a significantly higher likelihood of almost all mental health conditions examined as compared to other homeless women and men, including depression, posttraumatic stress disorder, other anxiety disorders, substance use disorders, bipolar disorders, personality disorders, suicide, and, among men only, schizophrenia and psychotic disorders. Nearly all homeless Veterans had at least one mental health visit and Veterans who experienced MST utilized significantly more mental health visits compared to Veterans who did not experience MST.
CONCLUSIONS
A substantial proportion of homeless Veterans using VHA services have experienced MST, and those who experienced MST had increased odds of mental health diagnoses. Homeless Veterans who had experienced MST had higher intensity of mental health care utilization and high rates of MST-related mental health care. This study highlights the importance of trauma-informed care among homeless Veterans and the success of VHA homeless programs in providing mental health care to homeless Veterans.
doi:10.1007/s11606-013-2341-4
PMCID: PMC3695264  PMID: 23807062
Veterans; homelessness; sexual assault; mental health
7.  Fulfillment of the Brazilian Agenda of Priorities in Health Research 
This commentary describes how the Brazilian Ministry of Health's (MoH) research support policy fulfilled the National Agenda of Priorities in Health Research (NAPHR). In 2003, the MoH started a democratic process in order to establish a priority agenda in health research involving investigators, health managers and community leaders. The Agenda was launched in 2004 and is guiding budget allocations in an attempt to reduce the gap between scientific knowledge and health practice and activities, aiming to contribute to improving Brazilian quality of life. Many strategies were developed, for instance: Cooperation Agreements between the Ministry of Health and the Ministry of Science and Technology; the decentralization of research support at state levels with the participation of local Health Secretariats and Science and Technology Institutions; Health Technology Assessment; innovation in neglected diseases; research networks and multicenter studies in adult, women's and children's health; cardiovascular risk in adolescents; clinical research and stem cell therapy. The budget allocated by the Ministry of Health and partners was expressive: US$419 million to support almost 3,600 projects. The three sub-agenda with the higher proportion of resources were "industrial health complex", "clinical research" and "communicable diseases", which are considered strategic for innovation and national development. The Southeast region conducted 40.5% of all projects and detained 59.7% of the resources, attributable to the concentration of the most traditional health research institutes and universities in the states of São Paulo and Rio de Janeiro. The second most granted region was the Northeast, which reflects the result of a governmental policy to integrate and modernize this densely populated area and the poorest region in the country. Although Brazil began the design and implementation of the NAPHR in 2003, it has done so in accordance with the 'good practice principles' recently published: inclusive process, information gathering, careful planning and funding policy, transparency and internal evaluation (an external independent evaluation is underway). The effort in guiding the health research policy has achieved and legitimated an unprecedented developmental spurt to support strategic health research. We believe this experience is valuable and applicable to other countries, but different settings and local political circumstances will determine the best course of action to follow.
doi:10.1186/1478-4505-9-35
PMCID: PMC3189161  PMID: 21884575
8.  Gender Differences in Rates of Depression, PTSD, Pain, Obesity, and Military Sexual Trauma Among Connecticut War Veterans of Iraq and Afghanistan 
Journal of Women's Health  2010;19(2):267-271.
Abstract
Purpose
The current wars in Iraq and Afghanistan have led to an increasing number of female veterans seeking medical and mental healthcare in the Department of Veterans Affairs (VA) healthcare system. To better understand gender differences in healthcare needs among recently returned veterans, we examined the prevalence of positive screenings for depression, posttraumatic stress disorder (PTSD), military sexual trauma (MST), obesity, and chronic pain among female and male veterans of Operation Enduring Freedom/Operation Iraqi Freedom (OEF/OIF) receiving care at the VA Connecticut Healthcare System.
Methods
We performed a retrospective, cross-sectional data analysis of OEF/OIF veterans at VA Connecticut who received services in either Primary Care or the Women's Health Clinic between 2001 and 2006.
Results
In this study, 1129 electronic medical records (1032 men, 197 women) were examined. Female veterans were more likely to screen positive for MST (14% vs. 1%, p < 0.001) and depression (48% vs. 39%, p = 0.01) and less likely to screen positive for PTSD (21% vs. 33%, p = 0.002). There was no significant gender difference in clinically significant pain scores. Men were more likely than women to have body mass index (BMI) >30 kg/m2 (21% vs. 13%, p = 0.008).
Conclusions
These results suggest that important gender differences exist in the prevalence of positive screenings for MST, depression, obesity, and PTSD. As the VA continues to review and improve its services for women veterans, clinicians, researchers, and senior leaders should consider innovative ways to ensure that female veterans receive the health services they need within the VA system.
doi:10.1089/jwh.2008.1262
PMCID: PMC3052274  PMID: 20109115
9.  Building a national direction for research in the prevention of mother to child transmission of HIV: results from a national prioritization initiative in Malawi 
Background
In 2011, Malawi initiated an ambitious program for the prevention of maternal to child transmission (PMTCT) of HIV, called 'Option B+,’ which employs a universal test and life-long treatment strategy for all pregnant women. Priority setting should take place in defining a national research agenda for evaluating Option B + rollout in Malawi.
Methods
In April 2011, a three-day workshop took place for all major stakeholders in PMTCT aiming to provide an update on current PMTCT operational research in Malawi, find consensus on key questions not yet being addressed, identify opportunities for collaboration, and develop multi-partner research proposals.
Results
Overall, 24 participants attended the workshop including representatives from the Ministry of Health, the National AIDS Commission and 12 multilateral, non-governmental organizations and academic partners.
Three interrelated clusters emerged as priorities for research: i) pregnancy intentions and family planning needs; ii) evaluation of models of care; and iii) determinants of uptake, adherence, and retention of women for Option B+. In addition, two cross-cutting themes arose: partner involvement in PMTCT services and cost-effectiveness as a guide to priority setting.
Within each cluster a coordinator was designated and a proposed plan for research and potential collaborators were discussed. The results of the workshop were presented to the national technical working groups and the National AIDS Commission. Several large-scale, collaborative proposals have been developed and funded to address the research areas defined.
Conclusions
Option B + represents a significant change in PMTCT policy in Malawi and the process for evaluation of the Malawi PMTCT strategy is outlined. This workshop contributed to defining and coordinating the national agenda for research priorities.
doi:10.1186/1478-4505-11-40
PMCID: PMC4231351  PMID: 24161044
Malawi; National agenda; PMTCT Option B+; Research priorities
10.  Cardiovascular Disease Risk Factors Among Women Veterans at VA Medical Facilities 
Journal of General Internal Medicine  2013;28(Suppl 2):517-523.
ABSTRACT
BACKGROUND
Hypertension, hyperlipidemia, diabetes, and obesity in middle adulthood each elevate the long-term risk of cardiovascular disease (CVD). The prevalence of these conditions among women veterans is incompletely described.
OBJECTIVE
To describe the prevalence of CVD risk factors among women veterans in middle adulthood.
DESIGN
Serial cross-sectional studies of data from the Diabetes Epidemiologic Cohorts (DEpiC), a national, longitudinal data set including information on all patients in the Veterans Health Administration (VA).
PARTICIPANTS
Women veterans (n = 255,891) and men veterans (n = 2,271,605) aged 35–64 receiving VA care in fiscal year (FY) 2010.
MAIN MEASURES
Prevalence of CVD risk factors in FY2010 by age and, for those aged 45–54 years, by race, region, period of military service, priority status, and mental illness or substance abuse; prevalence by year from 2000 to 2010 in women veterans receiving VA care in both 2000 and 2010 who were free of the factor in 2000.
KEY RESULTS
Hypertension, hyperlipidemia, and diabetes were common among women and men, although more so among men. Hypertension was present in 13 % of women aged 35–44 years, 28 % of women aged 45–54, and 42 % of women aged 55–64. Hyperlipidemia prevalence was similar. Diabetes affected 4 % of women aged 35–44, and increased more than four-fold in prevalence to 18 % by age 55–64. The prevalence of obesity increased from 14 % to 18 % with age among women and was similarly prevalent in men. The relative rate of having two or more CVD risk factors in women compared to men increased progressively with age, from 0.55 (35–44 years) to 0.71 (45–54) to 0.73 (55–64). Most of the women with a factor present in 2010 were first diagnosed with the condition in the 10 years between 2000 and 2010.
CONCLUSIONS
CVD risk factors are common among women veterans aged 35–64. Future research should investigate which interventions would most effectively reduce risk in this population.
Electronic supplementary material
The online version of this article (doi:10.1007/s11606-013-2381-9) contains supplementary material, which is available to authorized users.
doi:10.1007/s11606-013-2381-9
PMCID: PMC3695262  PMID: 23807059
women; veterans; epidemiology; cardiovascular disease; risk factors
11.  Asking the right questions: developing evidence-based strategies for treating HIV in women and children 
BMC Public Health  2011;11:388.
In July 2010, the World Health Organization (WHO) issued formal revisions of its guidelines on the use of highly active antiretroviral therapy for HIV. The new guidelines greatly expand eligibility for treatment of adults and children, as well as for pregnant women seeking prophylaxis for vertical HIV transmission. WHO's new recommendations bring the guidelines closer to practices in developed countries, and its shift to earlier treatment alone will increase the number of treatment-eligible people by 50% or more.
Scaling up access to HIV treatment is revealing important gaps in our understanding of how best to provide for all those in need. This knowledge gap is especially significant in developing countries, where women and children comprise a majority of those living with HIV infection. Given the magnitude and significance of these populations, the International AIDS Society, through its Industry Liaison Forum, prioritized HIV treatment and prophylaxis of women and children. In March 2010, the International AIDS Society and 15 partners launched a Consensus Statement outlining priority areas in which a relative lack of knowledge impedes delivery of optimal prevention of mother to child transmission (PMTCT) and treatment to women and children.
The Consensus Statement, "Asking the Right Questions: Advancing an HIV Research Agenda for Women and Children", makes a special appeal for a more gender-sensitive approach to HIV research at all stages, from conception to design and implementation. It particularly emphasizes research to enhance the understanding of sex-based differences and paediatric needs in treatment uptake and response. In addition to clinical issues, the statement focuses on programmatic research that facilitates access and adherence to antiretroviral regimens. Better coordination of HIV management with sexual and reproductive healthcare delivery is one such approach.
We discuss here our knowledge gaps concerning effective, safe PMTCT and treatment for women and children in light of the expansion envisioned by WHO's revised guidelines. The guideline's new goals present an opportunity for advancing the women and children's agenda outlined in the Consensus Statement.
doi:10.1186/1471-2458-11-388
PMCID: PMC3118247  PMID: 21612633
12.  The Role of HIV-Related Stigma in Utilization of Skilled Childbirth Services in Rural Kenya: A Prospective Mixed-Methods Study 
PLoS Medicine  2012;9(8):e1001295.
Janet Turan and colleagues examined the role of the perception of women in rural Kenya of HIV-related stigma during pregnancy on their subsequent utilization of maternity services.
Background
Childbirth with a skilled attendant is crucial for preventing maternal mortality and is an important opportunity for prevention of mother-to-child transmission of HIV. The Maternity in Migori and AIDS Stigma Study (MAMAS Study) is a prospective mixed-methods investigation conducted in a high HIV prevalence area in rural Kenya, in which we examined the role of women's perceptions of HIV-related stigma during pregnancy in their subsequent utilization of maternity services.
Methods and Findings
From 2007–2009, 1,777 pregnant women with unknown HIV status completed an interviewer-administered questionnaire assessing their perceptions of HIV-related stigma before being offered HIV testing during their first antenatal care visit. After the visit, a sub-sample of women was selected for follow-up (all women who tested HIV-positive or were not tested for HIV, and a random sample of HIV-negative women, n = 598); 411 (69%) were located and completed another questionnaire postpartum. Additional qualitative in-depth interviews with community health workers, childbearing women, and family members (n = 48) aided our interpretation of the quantitative findings and highlighted ways in which HIV-related stigma may influence birth decisions. Qualitative data revealed that health facility birth is commonly viewed as most appropriate for women with pregnancy complications, such as HIV. Thus, women delivering at health facilities face the risk of being labeled as HIV-positive in the community. Our quantitative data revealed that women with higher perceptions of HIV-related stigma (specifically those who held negative attitudes about persons living with HIV) at baseline were subsequently less likely to deliver in a health facility with a skilled attendant, even after adjusting for other known predictors of health facility delivery (adjusted odds ratio = 0.44, 95% CI 0.22–0.88).
Conclusions
Our findings point to the urgent need for interventions to reduce HIV-related stigma, not only for improving quality of life among persons living with HIV, but also for better health outcomes among all childbearing women and their families.
Please see later in the article for the Editors' Summary.
Editors' Summary
Background
Every year, nearly 350,000 women die from pregnancy- or childbirth-related complications. Almost all these “maternal” deaths occur in developing countries. In sub-Saharan Africa, for example, the maternal mortality ratio (the number of maternal deaths per 100,000 live births) is 500 whereas in industrialized countries it is only 12. Most maternal deaths are caused by hemorrhage (severe bleeding after childbirth), post-delivery infections, obstructed (difficult) labor, and blood pressure disorders during pregnancy. All these conditions can be prevented if women have access to adequate reproductive health services and if trained health care workers are present during delivery. Notably, in sub-Saharan Africa, infection with HIV (the virus that causes AIDS) is an increasingly important contributor to maternal mortality. HIV infection causes maternal mortality directly by increasing the occurrence of pregnancy complications and indirectly by increasing the susceptibility of pregnant women to malaria, tuberculosis, and other “opportunistic” infections—HIV-positive individuals are highly susceptible to other infections because HIV destroys the immune system.
Why Was This Study Done?
Although skilled delivery attendants reduce maternal mortality, there are many barriers to their use in developing countries including cost and the need to travel long distances to health facilities. Fears and experiences of HIV-related stigma and discrimination (prejudice, negative attitudes, abuse, and maltreatment directed at people living with HIV) may also be a barrier to the use of skilled childbirth service. Maternity services are prime locations for HIV testing and for the provision of interventions for the prevention of mother-to-child transmission (PMTCT) of HIV, so pregnant women know that they will have to “deal with” the issue of HIV when visiting these services. In this prospective mixed-methods study, the researchers examine the role of pregnant women's perceptions of HIV-related stigma in their subsequent use of maternity services in Nyanza Province, Kenya, a region where 16% women aged 15–49 are HIV-positive and where only 44.2% of mothers give birth in a health facility. A mixed-methods study combines qualitative data—how people feel about an issue—with quantitative data—numerical data about outcomes.
What Did the Researchers Do and Find?
In the Maternity in Migori and AIDS Stigma (MAMAS) study, pregnant women with unknown HIV status living in rural regions of Nyanza Province answered questions about their perceptions of HIV-related stigma before being offered HIV testing during their first antenatal clinic visit. After delivery, the researchers asked the women who tested HIV positive or were not tested for HIV and a sample of HIV-negative women where they had delivered their baby. They also gathered qualitative information about barriers to maternity and HIV service use by interviewing childbearing women, family members, and community health workers. The qualitative data indicate that labor in a health facility is commonly viewed as being most appropriate for women with pregnancy complications such as HIV infection. Thus, women delivering at health facilities risk being labeled as HIV positive, a label that the community associates with promiscuity. The quantitative data indicate that women with more negative attitudes about HIV-positive people (higher perceptions of HIV-related stigma) at baseline were about half as likely to deliver in a health facility with a skilled attendant as women with more positive attitudes about people living with HIV.
What Do These Findings Mean?
These findings suggest that HIV-related stigma is associated with the low rate of delivery by skilled attendants in rural areas of Nyanza Province and possibly in other rural regions of sub-Saharan Africa. Community mobilization efforts aimed at increasing the use of PMTCT services may be partly responsible for the strong perception that delivery in a health facility is most appropriate for women with HIV and other pregnancy complications and may have inadvertently strengthened the perception that women who give birth in such facilities are likely to be HIV positive. The researchers suggest, therefore, that health messages should stress that delivery in a health facility is recommended for all women, not just HIV-positive women or those with pregnancy complications, and that interventions should be introduced to reduce HIV-related stigma. This combined strategy has the potential to increase the use of maternity services by all women and the use of HIV and PMTCT services, thereby reducing some of the most pressing health problems facing women and their children in sub-Saharan Africa.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001295.
The United Nations Children's Fund (UNICEF) provides information on maternal mortality, including the WHO/UNICEF/UNFPA/World Bank 2008 country estimates of maternal mortality; a UNICEF special report tells the stories of seven mothers living with HIV in Lesotho
The World Health Organization provides information on maternal health, including information about Millennium Development Goal 5, which aims to reduce maternal mortality (in several languages); the Millennium Development Goals, which were agreed by world leaders in 2000, are designed to eradicate extreme poverty worldwide by 2015
Immpact is a global research initiative for the evaluation of safe motherhood intervention strategies
Maternal Death: The Avoidable Crisis is a briefing paper published by the independent humanitarian medical aid organization Médecins Sans Frontières (MSF) in March 2012
Information is available from Avert, an international AIDS charity on all aspects of HIV/AIDS, including information on women, HIV and AIDS, on HIV and pregnancy, on HIV and AIDS stigma and discrimination, and on HIV in Kenya (in English and Spanish); Avert also has personal stories from women living with HIV
The Stigma Action Network (SAN) is a collaborative endeavor that aims to comprehensively coordinate efforts to develop and expand program, research, and advocacy strategies for reducing HIV stigma worldwide, including mobilizing stakeholders, delivering program and policy solutions, and maximizing investments in HIV programs and services globally
The People Living with Stigma Index aims to address stigma relating to HIV and advocate on key barriers and issues perpetuating stigma; it has recently published Piecing it together for women and girls, the gender dimensions of HIV-related stigma
The Health Policy Project http://www.healthpolicyproject.com has prepared a review of the academic and programmatic literature on stigma and discrimination as barriers to achievement of global goals for maternal health and the elimination of new child HIV infections (see under Resources)
More information on the MAMAS study is available from the UCSF Center for AIDS Prevention Studies
doi:10.1371/journal.pmed.1001295
PMCID: PMC3424253  PMID: 22927800
13.  Impact of Antiretroviral Therapy on Incidence of Pregnancy among HIV-Infected Women in Sub-Saharan Africa: A Cohort Study 
PLoS Medicine  2010;7(2):e1000229.
A multicountry cohort study in sub-Saharan Africa by Landon Myer and colleagues reveals higher pregnancy rates in HIV-infected women on antiretroviral therapy (ART).
Background
With the rapid expansion of antiretroviral therapy (ART) services in sub-Saharan Africa there is growing recognition of the importance of fertility and childbearing among HIV-infected women. However there are few data on whether ART initiation influences pregnancy rates.
Methods and Findings
We analyzed data from the Mother-to-Child Transmission-Plus (MTCT-Plus) Initiative, a multicountry HIV care and treatment program for women, children, and families. From 11 programs in seven African countries, women were enrolled into care regardless of HIV disease stage and followed at regular intervals; ART was initiated according to national guidelines on the basis of immunological and/or clinical criteria. Standardized forms were used to collect sociodemographic and clinical data, including incident pregnancies. Overall 589 incident pregnancies were observed among the 4,531 women included in this analysis (pregnancy incidence, 7.8/100 person-years [PY]). The rate of new pregnancies was significantly higher among women receiving ART (9.0/100 PY) compared to women not on ART (6.5/100 PY) (adjusted hazard ratio, 1.74; 95% confidence interval, 1.19–2.54). Other factors independently associated with increased risk of incident pregnancy included younger age, lower educational attainment, being married or cohabiting, having a male partner enrolled into the program, failure to use nonbarrier contraception, and higher CD4 cell counts.
Conclusions
ART use is associated with significantly higher pregnancy rates among HIV-infected women in sub-Saharan Africa. While the possible behavioral or biomedical mechanisms that may underlie this association require further investigation, these data highlight the importance of pregnancy planning and management as a critical but neglected component of HIV care and treatment services.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Human immunodeficiency virus (HIV) causes Acquired Immunodeficiency Syndrome (AIDS), which is a major global cause of disease and death. More than 33 million people around the world are infected with HIV, with nearly 5,500 dying daily from HIV and AIDS-related complications. HIV/AIDS is especially problematic in sub-Saharan Africa, where it is the leading cause of death. There is no cure for HIV/AIDS, but medicines known as “antiretroviral therapy” (ART) can prolong life and reduce complications in patients infected with HIV. 97% of patients with HIV/AIDS live in low- and middle-income countries. According to the World Health Organization, nearly 10 million of these patients need ART. As patients' access to treatment is often hindered by the high cost and low availability of ART, global health efforts have focused on promoting ART use in resource-limited nations. Such efforts also increase awareness of how HIV is spread (contact with blood or semen, in sexual intercourse, sharing needles, or from mother to child during childbirth). ART reduces, but does not remove, the chance of a mother's passing HIV to her child during birth.
Why Was This Study Done?
By the end of 2007, 3 million HIV-infected patients in poor countries were receiving ART. Many of those treated with ART are young women of child-bearing age. Childbirth is an important means of spreading HIV in sub-Saharan Africa, where 60% of all HIV patients are women. This study questions whether the improved health and life expectancy that results from treatment with ART affects pregnancy rates of HIV-infected patients. The study explores this question in seven African countries, by examining the rates of pregnancy in HIV-infected women before and after they started ART.
What Did the Researchers Do and Find?
The authors looked at the records of 4,531 HIV-infected women enrolled in the Mother-to-Child-Transmission-Plus (MTCT-Plus) Initiative in seven African countries. MTCT -Plus, begun in 2002, is a family-centered treatment program that offers regular checkups, blood tests, counseling, and ART treatment (if appropriate) to women and their families. At each checkup, women's CD4+ cell counts and World Health Organization guidelines were used to determine their eligibility for starting ART. Over a 4-year period, nearly a third of the women starting ART experienced a pregnancy: 244 pregnancies occurred in the “pre-ART” group (women not receiving ART) compared to 345 pregnancies in the “on-ART” group (women receiving ART). The chance of pregnancy increased over time in the on-ART group to almost 80% greater than the pre-ART group, while remaining relatively low and constant in the pre-ART group. The authors noted that, as expected, other factors also increased the chances of pregnancy, including younger age, lower educational status, and use of nonbarrier contraception such as injectable hormones.
What Do These Findings Mean?
This study suggests that starting ART is associated with higher pregnancy rates in sub-Saharan Africa, nearly doubling the chances of a woman becoming pregnant. The reasons for this link are unclear. One possible explanation is behavioral: women receiving ART may feel more motivated to have children as their health and quality of life improve. However, the study did not examine how pregnancy desires and sexual activity of women changed while on ART, and cannot discern why ART is linked to increased pregnancy. By using pregnancy data gathered from patient questionnaires rather than laboratory tests, the study is limited by the possibility of inaccurate patient reporting. Understanding how pregnancy rates vary in HIV-infected women receiving ART helps support the formation of responsive, effective HIV programs. Female HIV patients of child-bearing age, who form the majority of patients receiving ART in sub-Saharan Africa, would benefit from programs that combine starting HIV treatment with ART with education and contraception counseling and pregnancy-related care.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000229.
Information is available from the US National Institute of Allergy and Infectious Diseases on HIV infection and AIDS
HIV InSite has comprehensive information on all aspects of HIV/AIDS, including a list of articles and other sources of information about the primary care of adolescents with HIV
A UNAIDS 2008 report is available on the global AIDS epidemic
The International Planned Parenthood Foundation provides information on sexual and reproductive health and HIV
The International Center for AIDS Care and Treatment Programs at the Columbia University Mailman School of Public health provides information to assist HIV care and treatment programs in resource-limited settings
doi:10.1371/journal.pmed.1000229
PMCID: PMC2817715  PMID: 20161723
14.  Access to Care for Women Veterans: Delayed Healthcare and Unmet Need 
Journal of General Internal Medicine  2011;26(Suppl 2):655-661.
ABSTRACT
BACKGROUND
Timely access to healthcare is essential to ensuring optimal health outcomes, and not surprisingly, is at the heart of healthcare reform efforts. While the Veterans Health Administration (VA) has made improved access a priority, women veterans still underutilize VA healthcare relative to men. Eliminating access disparities requires a better understanding of the barriers to care that women veterans’ experience.
OBJECTIVE
We examined the association of general and veteran-specific barriers on access to healthcare among women veterans.
DESIGN AND PARTICIPANTS
Cross-sectional, population-based national telephone survey of 3,611 women veterans.
MAIN MEASURE
Delayed healthcare or unmet healthcare need in the prior 12 months.
KEY RESULTS
Of women veterans, 19% had delayed healthcare or unmet need, with higher rates in younger age groups (36%, 29%, 16%, 7%, respectively, in 18–34, 35–49, 50–64, and 65-plus age groups; p < 0.001). Among those delaying or going without care, barriers that varied by age group were: unaffordable healthcare (63% of 18–34 versus 12% of 65-plus age groups); inability to take off from work (39% of those <50); and transportation difficulties (36% of 65-plus). Controlling for age, race/ethnicity, regular source of care, and health status, being uninsured (OR = 6.5; confidence interval [CI] 3.0–14.0), knowledge gaps about VA care (OR = 2.1; 95% CI 1.1–4.0), perception that VA providers are not gender-sensitive (OR = 2.4; CI 1.2–4.7), and military sexual assault history (OR = 2.1; CI 1.1–4.0) predicted delaying or foregoing care, whereas VA use and enrollment priority did not.
CONCLUSIONS
Both general and veteran-specific factors impact women veterans’ access to needed services. Many of the identified access barriers are potentially modifiable through expanded VA healthcare and social services. Health reform efforts should address these barriers for VA nonusers. Efforts are also warranted to improve women veterans’ knowledge of availability and affordability of VA healthcare, and to enhance the gender-sensitivity of this care.
doi:10.1007/s11606-011-1772-z
PMCID: PMC3191223  PMID: 21989618
access to care; women veterans; VA healthcare; health services need; health services utilization
15.  Community-based participatory research (CBPR) in South Africa: Engaging multiple constituents to shape the research question 
Social science & medicine (1982)  2005;61(12):2577-2587.
Community engagement is an on-going, arduous, and necessary process for developing effective health promotion programs. The challenges are amplified when the particular health issue or research question is not prominent in the consciousness of the targeted community. In this paper, we explore the community-based participatory research (CBPR) model as a means to negotiate a mutual agenda between communities and researchers.
The paper is focused on the (perceived) need for cervical cancer screening in an under-resourced community in Cape Town, South Africa. Cervical cancer is a significant health problem in this community and elsewhere in South Africa. Unlike HIV-AIDS, however, many Black South Africans have not been educated about cervical cancer and the importance of obtaining screening. Many may not consider screening a priority in their lives.
Our research included extensive consultations and informal interviews with diverse community and regional stakeholders. Following these, we conducted 27 focus groups and 106 demographic surveys with randomly selected youth, parents, local health care personnel, educators and school staff. Focus group data were summarized and analyzed cross-sectionally. Community stakeholders were involved throughout this research.
Our consultations, interviews, and focus group data were key in identifying the concerns and priorities of the community. By engaging community stakeholders, we developed a research framework that incorporated the community’s concerns and priorities, and stressed the intersecting roles of poverty, violence, and other cultural forces in shaping community members’ health and wellbeing. Community members helped to refocus our research from cervical cancer to ‘cervical health,’ a concept that acknowledged the impact on women’s bodies and lives of HIV-AIDS and STDs, sexual violence, poverty, and multiple social problems. We conclude that the research agenda and questions in community-based health research should not be considered immutable. They need to be open to negotiation, creativity, and constant reinvention.
doi:10.1016/j.socscimed.2005.04.041
PMCID: PMC3248692  PMID: 15955605
South Africa; Community-based participatory research; Cervical cancer; Community engagement
16.  The Impact of eHealth on the Quality and Safety of Health Care: A Systematic Overview 
PLoS Medicine  2011;8(1):e1000387.
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.
Background
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.
Conclusions
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
Background
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
doi:10.1371/journal.pmed.1000387
PMCID: PMC3022523  PMID: 21267058
17.  Health policy and systems research agendas in developing countries 
Background
Health policy and systems research (HPSR) is an international public good with potential to orient investments and performance at national level. Identifying research trends and priorities at international level is therefore important. This paper offers a conceptual framework and defines the HPSR portfolio as a set of research projects under implementation. The research portfolio is influenced by factors external to the research system as well as internal to it. These last include the capacity of research institutions, the momentum of research programs, funding opportunities and the influence of stakeholder priorities and public opinion. These dimensions can vary in their degree of coordination, leading to a complementary or a fragmented research portfolio.
Objective
The main objective is to identify the themes currently being pursued in the research portfolio and agendas within developing countries and to quantify their frequency in an effort to identify current research topics and their underlying influences.
Methods
HPSR topics being pursued by developing country producer institutions and their perceived priorities were identified through a survey between 2000 and 2002. The response to a call for letters of intent issued by the Alliance in 2000 for a broad range of topics was also analyzed. The institutions that were the universe of this study consisted of the 176 institutional partners of the Alliance for Health Policy and Systems Research producing research in low and middle income countries outside Europe. HPSR topics as well as the beneficiaries or issues and the health problems addressed were content analyzed. Topics were classified into 19 categories and their frequency analyzed across groups of countries with similar per capita income. Agendas were identified by analyzing the source of funding and of project initiation for projects under implementation.
Results
The highest ranking topic at the aggregate level is "Sector analysis", followed by "Disease burden" and "Management and organization". Categories at the bottom of this ranking are "Equity", "Policy process", "Economic policy and health" and "Information systems". "Disease burden" is more often funded than other topics for which there is more demand or perceived priority. Analysis suggests few although important differences across priorities, demand for funding and actual project funding. The donors' agenda coincides most with the ranking of research topics overall.
Ranking across country income groups shows important differences. Topics that gain prominence in low income countries are "Disease burden" and "Accessibility". In lower middle income countries "Insurance" gains prominence. In upper middle income countries "Decentralization/local health systems", "Equity" and "Policy process" are more prominent. "Program evaluation" is the most consistently ranked topic across income regions, showing a neutral influence by donors, governments or researchers.
Conclusions
The framework proposed offers a basis to identify and contrast research needs, projects and products at the international level and to identify the actor agendas and their influence. Research gaps are suggested when comparing topic ranking against the challenges to health system strengthening and scaling up of disease control programs. Differences across per capita income groups suggests the need for differentiated priority setting mechanisms guiding international support. Data suggests that stakeholders have different agendas, and that donors predominate in determining the research portfolio. High-level consensus building at the national and international levels is necessary to ensure that the diverse agendas play a complementary role in support of health system objectives.
The Ministerial Summit for Health Research to be held in Mexico in November 2004 should be an opportunity to analyze further data and to commit funding for priorities identified through sharing and discussion of agendas.
doi:10.1186/1478-4505-2-6
PMCID: PMC514533  PMID: 15296509
18.  Factors Related to Attrition from VA Healthcare Use: Findings from the National Survey of Women Veterans 
Journal of General Internal Medicine  2013;28(Suppl 2):510-516.
ABSTRACT
BACKGROUND
While prior research characterizes women Veterans’ barriers to accessing and using Veterans Health Administration (VA) care, there has been little attention to women who access VA and use services, but then discontinue use. Recent data suggest that among women Veterans, there is a 30 % attrition rate within 3 years of initial VA use.
OBJECTIVES
To compare individual characteristics and perceptions about VA care between women Veteran VA attriters (those who discontinue use) and non-attriters (those who continue use), and to compare recent versus remote attriters.
DESIGN
Cross-sectional, population-based 2008–2009 national telephone survey.
PARTICIPANTS
Six hundred twenty-six attriters and 2,065 non-attriters who responded to the National Survey of Women Veterans.
MAIN MEASURES
Population weighted demographic, military and health characteristics; perceptions about VA healthcare; length of time since last VA use; among attriters, reasons for no longer using VA care.
KEY RESULTS
Fifty-four percent of the weighted VA ever user population reported that they no longer use VA. Forty-five percent of attrition was within the past ten years. Attriters had better overall health (p = 0.007), higher income (p < 0.001), and were more likely to have health insurance (p < 0.001) compared with non-attriters. Attriters had less positive perceptions of VA than non-attriters, with attriters having lower ratings of VA quality and of gender-specific features of VA care (p < 0.001). Women Veterans who discontinued VA use since 2001 did not differ from those with more remote VA use on most measures of VA perceptions. Overall, among attriters, distance to VA sites of care and having alternate insurance coverage were the most common reasons for discontinuing VA use.
CONCLUSIONS
We found high VA attrition despite recent advances in VA care for women Veterans. Women’s attrition from VA could reduce the critical mass of women Veterans in VA and affect current system-wide efforts to provide high-quality care for women Veterans. An understanding of reasons for attrition can inform organizational efforts to re-engage women who have attrited, to retain current users, and potentially to attract new VA patients.
doi:10.1007/s11606-013-2347-y
PMCID: PMC3695263  PMID: 23807058
Veterans; women’s health; access to care; attrition
19.  Improving the quality of healthcare for children: implementing the results of the AHSR research agenda conference. 
Health Services Research  1998;33(4 Pt 2):955-976.
OBJECTIVE: To describe the rationale, development, content, and results of the AHSR-sponsored conference on developing a research agenda focused on improving the quality of care for children. DATA SOURCES AND METHODS: Planning documents, background papers, and conference proceedings. PRINCIPAL FINDINGS: The conference developed the research agenda focused on (1) monitoring the health of children; (2) evaluating the efficacy and effectiveness of health services for children; (3) assessing the quality of healthcare provided to children; (4) improving the quality of healthcare within health systems; (5) assessing the performance of community systems for children; (6) exploring the impact of different financial incentives on the provision of pediatric healthcare; and (7) developing and disseminating clinical practice guidelines and other information to physicians, families, and consumers. Specific issues and research questions in each area are also presented. Strategies for implementing the research agenda are presented and include: (1) expanding the child health services research workforce; (2) developing child healthcare quality improvement research centers; (3) conducting research in specific high-priority areas; (4) focusing research on improving the health of vulnerable populations; (5) improving child health data and collection systems at the national level; (6) developing better community health monitoring for children; (7) building and supporting research networks and a consortium of research users; and (8) developing a coordinated interagency federal effort to advance this agenda and to provide accountability for its completion. CONCLUSION: The proposed research agenda should be a national priority so that all Americans can be assured that children are receiving the best quality of care that the United States can provide.
PMCID: PMC1070300  PMID: 9776945
20.  The whole is greater than the sum of its parts: the anatomy of the Department of Veterans Affairs Medical District 17 Health Services Research and Development Field Program. 
Health Services Research  1990;25(1 Pt 2):269-285.
The Medical District 17 Health Services Research and Development (HSR&D) Field Program was funded by the Veterans Administration (now the Department of Veterans Affairs--VA) in January 1983. This article describes the organization, progress, and accomplishments of this field program, and it provides a review of the breadth of health services research that is being conducted in Medical District 17. Overall, the field program has conducted research that addresses significant problems in the delivery of health care within the VA system. Resource utilization, cost effectiveness, and the care of geriatric patients have been some of the areas in which the Medical District 17 HSR&D Field Program has provided important research findings for VA. The field program plans to continue its response to the needs of VA. Moreover, HSR&D investigators will be collaborating with researchers of other services to conduct research that is both enlightening and highly relevant to the delivery of health care to the nation's veterans. The proposal for an HSR&D field program was developed by the Edward A. Hines Jr. VA Hospital in collaboration with the Center for Health Services and Policy Research (CHSPR) of Northwestern University. The program was funded in January 1983, as the result of a national competition to establish an HSR&D field program in each of the VA regions. The goals of the Medical District 17 Field Program are to improve the health care of veterans by conducting relevant research on the processes and outcomes of patient care; to provide comprehensive technical research assistance; and to educate VA managers, planners, and clinicians, as well as the general medical community, about advances in health care delivery. The field program's commitment to excellence is strengthened by its multidisciplinary approach, which enables physicians, nurses, social workers, psychologists, sociologists, economists, statisticians, administrators, and individuals in various related disciplines to cooperate in efforts to address a wide range of topical issues. These collaborations are a major strength of the field program. Primary research priorities of the field program are cost effectiveness of VA services (e.g., patient care technologies, delivery systems), long-term care, and rehabilitation. Investigators, however, are not limited to these topics and explore many other health services research issues of particular interest to them.
PMCID: PMC1065625  PMID: 2184151
21.  VA Location and Structural Factors Associated with On-Site Availability of Reproductive Health Services 
Journal of General Internal Medicine  2013;28(Suppl 2):591-597.
ABSTRACT
INTRODUCTION
With the increasing number of women Veterans enrolling in the Veterans Health Administration (VA), there is growing demand for reproductive health services. Little is known regarding the on-site availability of reproductive health services at VA and how this varies by site location and type.
OBJECTIVE
To describe the on-site availability of hormonal contraception, intrauterine device (IUD) placement, infertility evaluation or treatment, and prenatal care by site location and type; the characteristics of sites providing these services; and to determine whether, within this context, site location and type is associated with on-site availability of these reproductive health services.
METHODS
We used data from the 2007 Veterans Health Administration Survey of Women Veterans Health Programs and Practices, a national census of VA sites serving 300 or more women Veterans assessing practice structure and provision of care for women. Hierarchical models were used to test whether site location and type (metropolitan hospital-based clinic, non-metropolitan hospital-based clinic, metropolitan community-based outpatient clinic [CBOC]) were associated with availability of IUD placement and infertility evaluation/treatment. Non-metropolitan CBOCs were excluded from this analysis (n = 2).
RESULTS
Of 193 sites, 182 (94 %) offered on-site hormonal contraception, 97 (50 %) offered on-site IUD placement, 57 (30 %) offered on-site infertility evaluation/treatment, and 11 (6 %) offered on-site prenatal care. After adjustment, compared with metropolitan hospital based-clinics, metropolitan CBOCs were less likely to offer on-site IUD placement (OR 0.33; 95 % CI 0.14, 0.74).
CONCLUSION
Compared with metropolitan hospital-based clinics, metropolitan CBOCs offer fewer specialized reproductive health services on-site. Additional research is needed regarding delivery of specialized reproductive health care services for women Veterans in CBOCs and clinics in non-metropolitan areas.
doi:10.1007/s11606-012-2289-9
PMCID: PMC3695272  PMID: 23807070
women veterans; reproductive health; reproductive health services; Department of Veterans Affairs
22.  Primary Care Research Team Assessment (PCRTA): development and evaluation. 
BACKGROUND: Since the early 1990s the United Kingdom (UK) Department of Health has explicitly promoted a research and development (R&D) strategy for the National Health Service (NHS). General practitioners (GPs) and other members of the primary care team are in a unique position to undertake research activity that will complement and inform the research undertaken by basic scientists and hospital-based colleagues and lead directly to a better evidence base for decision making by primary care professionals. Opportunities to engage in R&D in primary care are growing and the scope for those wishing to become involved is finally widening. Infrastructure funding for research-active practices and the establishment of a range of support networks have helped to improve the research capacity and blur some of the boundaries between academic departments and clinical practice. This is leading to a supportive environment for primary care research. There is thus a need to develop and validate nationally accepted quality standards and accreditation of performance to ensure that funders, collaborators and primary care professionals can deliver high quality primary care research. Several strategies have been described in national policy documents in order to achieve an improvement in teaching and clinical care, as well as enhancing research capacity in primary care. The development of both research practices and primary care research networks has been recognised as having an important contribution to make in enabling health professionals to devote more protected time to undertake research methods training and to undertake research in a service setting. The recognition and development of primary care research has also brought with it an emphasis on quality and standards, including an approach to the new research governance framework. PRIMARY CARE RESEARCH TEAM ASSESSMENT: In 1998, the NHS Executive South and West, and later the London Research and Development Directorate, provided funding for a pilot project based at the Royal College of General Practitioners (RCGP) to develop a scheme to accredit UK general practices undertaking primary care R&D. The pilot began with initial consultation on the development of the process, as well as the standards and criteria for assessment. The resulting assessment schedule allowed for assessment at one of two levels: Collaborative Research Practice (Level I), with little direct experience of gaining project or infrastructure funding Established Research Practice (Level II), with more experience of research funding and activity and a sound infrastructure to allow for growth in capacity. The process for assessment of practices involved the assessment of written documentation, followed by a half-day assessment visit by a multidisciplinary team of three assessors. IMPLEMENTATION--THE PILOT PROJECT: Pilot practices were sampled in two regions. Firstly, in the NHS Executive South West Region, where over 150 practices expressed an interest in participating. From these a purposive sample of 21 practices was selected, providing a range of research and service activity. A further seven practices were identified and included within the project through the East London and Essex Network of Researchers (ELENoR). Many in this latter group received funding and administrative support and advice from ELENoR in order to prepare written submissions for assessment. Some sample loss was encountered within the pilot project, which was attributable largely to conflicting demands on participants' time. Indeed, the preparation of written submissions within the South West coincided with the introduction of primary care groups (PCGs) in April 1999, which several practices cited as having a major impact on their participation in the pilot project. A final sample of 15 practices (nine in the South West and six through ELENoR) underwent assessment through the pilot project. EVALUATION: A formal evaluation of the Primary Care Research Team Assessment (PCRTA) pilot was undertaken by an independent researcher (FM). This was supplemented with feedback from the assessment team members. The qualitative aspect of the evaluation, which included face-to-face and telephone interviews with assessors, lead researchers and other practice staff within the pilot research practices, as well as members of the project management group, demonstrated a positive view of the pilot scheme. Several key areas were identified in relation to particular strengths of research practices and areas for development including: Strengths Level II practices were found to have a strong primary care team ethos in research. Level II practices tended to have a greater degree of strategic thinking in relation to research. Development areas Level I practices were found to lack a clear and explicit research strategy. Practices at both levels had scope to develop their communication processes for dissemination of research and also for patient involvement. Practices at both levels needed mechanisms for supporting professional development in research methodology. The evaluation demonstrated that practices felt that they had gained from their participation and assessors felt that the scheme had worked well. Some specific issues were raised by different respondents within the qualitative evaluation relating to consistency of interpretation of standards and also the possible overlap of the assessment scheme with other RCGP quality initiatives. NATIONAL IMPLEMENTATION OF THE PRIMARY CARE RESEARCH TEAM ASSESSMENT: The pilot project has been very successful and recommendations have been made to progress to a UK scheme. Management and review of the scheme will remain largely the same, with a few changes focusing on the assessment process and support for practices entering the scheme. Specific changes include: development of the support and mentoring role of the primary care research networks increased peer and external support and mentoring for research practices undergoing assessment development of assessor training in line with other schemes within the RCGP Assessment Network work to ensure consistency across RCGP accreditation schemes in relation to key criteria, thereby facilitating comparable assessment processes refinement of the definition of the two groups, with Level I practices referred to as Collaborators and Level II practices as Investigator-Led. The project has continued to generate much enthusiasm and support and continues to reflect current policy. Indeed, recent developments include the proposed new funding arrangements for primary care R&D, which refer to the RCGP assessment scheme and recognise it as a key component in the future R&D agenda. The assessment scheme will help primary care trusts (PCTs) and individual practices to prepare and demonstrate their approach to research governance in a systematic way. It will also provide a more explicit avenue for primary care trusts to explore local service and development priorities identified within health improvement programmes and the research priorities set nationally for the NHS.
PMCID: PMC2560501  PMID: 12049028
23.  Facilitating the Recruitment of Minority Ethnic People into Research: Qualitative Case Study of South Asians and Asthma 
PLoS Medicine  2009;6(10):e1000148.
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.
Background
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.
Conclusions
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
Background
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
doi:10.1371/journal.pmed.1000148
PMCID: PMC2752116  PMID: 19823568
24.  Effect on Postpartum Hemorrhage of Prophylactic Oxytocin (10 IU) by Injection by Community Health Officers in Ghana: A Community-Based, Cluster-Randomized Trial 
PLoS Medicine  2013;10(10):e1001524.
Cynthia Stanton and colleagues conducted a cluster-randomized controlled trial in rural Ghana to assess whether oxytocin given by injection by community health officers at home births was a feasible and safe option in preventing postpartum hemorrhage.
Please see later in the article for the Editors' Summary
Background
Oxytocin (10 IU) is the drug of choice for prevention of postpartum hemorrhage (PPH). Its use has generally been restricted to medically trained staff in health facilities. We assessed the effectiveness, safety, and feasibility of PPH prevention using oxytocin injected by peripheral health care providers without midwifery skills at home births.
Methods and Findings
This community-based, cluster-randomized trial was conducted in four rural districts in Ghana. We randomly allocated 54 community health officers (stratified on district and catchment area distance to a health facility: ≥10 km versus <10 km) to intervention (one injection of oxytocin [10 IU] one minute after birth) and control (no provision of prophylactic oxytocin) arms. Births attended by a community health officer constituted a cluster. Our primary outcome was PPH, using multiple definitions; (PPH-1) blood loss ≥500 mL; (PPH-2) PPH-1 plus women who received early treatment for PPH; and (PPH-3) PPH-2 plus any other women referred to hospital for postpartum bleeding. Unsafe practice is defined as oxytocin use before delivery of the baby. We enrolled 689 and 897 women, respectively, into oxytocin and control arms of the trial from April 2011 to November 2012. In oxytocin and control arms, respectively, PPH-1 rates were 2.6% versus 5.5% (RR: 0.49; 95% CI: 0.27–0.88); PPH-2 rates were 3.8% versus 10.8% (RR: 0.35; 95% CI: 0.18–0.63), and PPH-3 rates were similar to those of PPH-2. Compared to women in control clusters, those in the intervention clusters lost 45.1 mL (17.7–72.6) less blood. There were no cases of oxytocin use before delivery of the baby and no major adverse events requiring notification of the institutional review boards. Limitations include an unblinded trial and imbalanced numbers of participants, favoring controls.
Conclusion
Maternal health care planners can consider adapting this model to extend the use of oxytocin into peripheral settings including, in some contexts, home births.
Trial registration
ClinicalTrials.gov NCT01108289
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Many women in low-and middle-income countries die unnecessarily during childbirth, even though the solutions to prevent or manage complications are well known. Maternal death rates are highest amongst poor women living in remote areas, as they are least likely to have access to adequate health care. One of the United Nation's Millennium Development Goals is to reduce maternal death rates by three-quarters by 2015. Between 1990 and 2010, these rates were nearly halved. So there is still some way to go to meet the target.
One of the major causes of maternal death is excessive bleeding after birth, known as postpartum hemorrhage (PPH). The highest rates of PPH are found in Africa (28% of births), with an overall global rate of 11%. PPH can be caused by the uterus not contracting after the baby is born, damage to tissues and blood vessels, retention of the placenta, and problems with blood-clotting.
PPH can be prevented by an injection of oxytocin (a hormone) or with tablets of the drug misoprostol immediately after birth. Other drugs exist but are used much less frequently in low-income countries. If the mother does bleed excessively, then these interventions can also be used to treat PPH in the hours following birth. These drugs cause the uterus to contract. Continued severe bleeding requires emergency treatment in hospital. The World Health Organization (WHO) recommends that in situations where women give birth without the assistance of a trained midwife, priority should be given to preventing PPH because access to emergency services may be limited.
Why Was This Study Done?
Of the two most common options for preventing PPH, oxytocin is generally the preferred choice. It has the advantage of having no side effects, whereas misoprostol can cause fever and shivering. A repeat injection of oxytocin can also be given if the mother continues to bleed excessively, whereas a dose of misoprostol after birth should only be given once. A major concern about both drugs is that the timing of administration must be precise. Giving a drug that causes the uterus to contract before birth can be harmful to both mother and baby. A disadvantage of oxytocin is that it requires someone trained and authorized to give an injection. For this reason, oxytocin has so far been generally limited to hospitals and clinics, where it can be administered by medically trained professionals. Another disadvantage is that oxytocin is weakened by heat, which means its storage and use may be impractical in hot countries.
The main aim of this study was therefore to find out whether health workers without midwifery skills are able to administer oxytocin safely when attending home births in poor, rural communities.
What Did the Researchers Do and Find?
The researchers carried out a cluster-randomized controlled trial in four rural districts in Ghana, working with community health officers (CHOs). CHOs are trained for two years in giving childhood immunizations and antenatal and postnatal care, but are not trained midwives. 54 CHOs were randomized to one of two groups. The CHOs in the first group gave a preventative oxytocin injection to the mother at every birth they attended. The oxytocin was administered using a pre-filled, disposable device called Uniject that is easier and quicker to use than a syringe and needle. The packaging also included a heat-sensitive label that indicated whether the oxytocin still met the manufacturer's criteria for an acceptably potent drug. CHOs in the second group acted as controls, and did not give any oxytocin injections to prevent PPH. The women seen by each CHO formed a cluster. Comparisons were made across the clusters of women that either received or did not receive the preventative intervention.
The researchers found that the women who were given a preventative oxytocin injection lost less blood after birth than the women who did not receive a preventative injection. There were also fewer cases of PPH amongst the women who received oxytocin for PPH prevention. 2.6% of the women who received a preventative oxytocin injection experienced PPH, compared to 5.5% of the controls. Therefore the risk of PPH was approximately halved. There were no cases of oxytocin use before delivery of the baby and no difference in the frequency of other birth complications between women in the intervention and control groups.
What Do These Findings Mean?
These findings show that under the trial conditions, CHOs can safely administer oxytocin injections when attending home births in poor, rural settings. This intervention also proved practical to use in the Uniject format.
The study therefore suggests that oxytocin should be considered for use in regions where maternal deaths from PPH are still unacceptably high. There are also several noteworthy limitations, such as unblinding and the imbalance between participant groups. The researchers emphasized that their findings do not mean that oxytocin is always a better choice than misoprostol for home births. Many factors will influence which intervention is the most feasible, such as the local availability of sufficiently skilled health professionals, the relative cost and availability of the two drugs, as well as ease of access to emergency health services.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001524.
This study is further discussed in a PLOS Medicine Perspective by João Paulo Souza
WHO Factsheet on Maternal Mortality
United Nations Population Fund's Goals to improve sexual and reproductive health
doi:10.1371/journal.pmed.1001524
PMCID: PMC3794862  PMID: 24130463
25.  Patterns of Hospice Care Among Military Veterans and Non-veterans 
Context
Historically, hospice use by veterans has lagged behind that of non-veterans. Little is known about hospice use by veterans at a population level.
Objectives
To determine whether veteran and non-veteran hospice users differ by demographics, primary diagnosis, location of care, and service utilization.
Methods
Using the 2007 National Home and Hospice Care Survey, we identified 483 veteran and 932 non-veteran male hospice users representing 287,620 hospice enrollees nationally. We used chi-square and t-tests to compare veterans and non-veterans by demographic characteristics, primary diagnosis, and location of hospice care. We used multivariate regression to assess for differences in hospice diagnosis and location of care, adjusting for demographic and clinical factors. We also compared length of stay and number of visits by hospice personnel between veterans and non-veterans using multivariate regression.
Results
Veteran hospice users were older than non-veterans (77.0 vs. 74.3 years, P = 0.02) but did not differ by other demographics. In adjusted analyses, cancer was a more common primary diagnosis among veterans than non-veterans (56.4% vs. 48.4%; P = 0.02), and veteran hospice users were more likely than non-veterans to receive hospice at home (68.4% vs. 57.6%; P = 0.007). The median adjusted length of stay and number of nurse or social worker visits did not differ by veteran status (all P > 0.10), but veterans received fewer home health aide visits than non-veterans (one every 5.3 days vs. one every 3.7 days; P = 0.002).
Conclusion
Although veteran and non-veteran hospice users were similar on most demographic measures, important differences in hospice referral patterns and utilization exist.
doi:10.1016/j.jpainsymman.2013.08.013
PMCID: PMC4031299  PMID: 24275325
Hospice; veterans; clinical case mix; demographics; health care utilization; nationally representative data

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