How the Electronic Health Record Will Change the Future of Health Care

Genetic testing is expected to play a critical role in patient care in the near future. Advances in genomic research have the potential to impact medicine in very tangible and direct ways, from carrier screening to disease diagnosis and prognosis to targeted treatments and personalized medicine. However, numerous barriers to widespread adoption of genetic testing continue to exist, and health information technology will be a critical means of addressing these challenges. Electronic health records (EHRs) are a digital replacement for the traditional paper-based patient chart designed to improve the quality of patient care. EHRs have become increasingly essential to managing the wealth of existing clinical information that now includes genetic information extracted from the patient genome. The EHR is capable of changing health care in the future by transforming the way physicians use genomic information in the practice of medicine.     

Including Ethnic Minorities in Mental Health Intervention Research: A Practical Approach to a Long-Standing Problem

This paper examines a controversy that arose while developing a supplement to Mental Health: A Report of the Surgeon General that was focused on ethnic minority mental health. The controversy involved whether and how to make recommendations about ethnic minorities seeking mental health care. We found that few studies provided information on outcomes of mental health care for ethnic minorities. In this paper, we discuss outcomes of mental health care for ethnic minorities and how to proceed in developing an evidence base for understanding mental health care and minorities. We conclude that entering representative (based on population) numbers of ethnic minorities in efficacy trials is unlikely to produce useful information on outcomes of care because the numbers will be too small to produce reliable findings. We also conclude that while conducting randomized efficacy trials for all mental health interventions for each ethnic group would be impractical, innovative and theoretically informed studies that focus on specific cultural groups are needed to advance the knowledge base. We call for theory-driven research focused on mental health disparities that has the potential for understanding disparities and improving outcomes for ethnic minority populations.     

The health and cost effects of substituting home care for inpatient acute care: a review of the evidence

BACKGROUND: There is much interest in reducing hospital stays by providing some health care services in patients'' homes. The authors review the evidence regarding the effects of this acute care at home (acute home care) on the health of patients and caregivers and on the social costs (public and private costs) of managing the patients'' health conditions. METHODS: MEDLINE and HEALTHSTAR databases were searched for articles using the key term "home care." Bibliographies of articles read were checked for additional references. Fourteen studies met the selection criteria (publication between 1975 and early 1998, evaluation of an acute home care program for adults, and use of a control group to evaluate the program). Of the 14, only 4 also satisfied 6 internal validity criteria (patients were eligible for home care, comparable patients in home care group and hospital care group, adequate patient sample size, appropriate analytical techniques, appropriate health measures and appropriate costing methods). RESULTS: The 4 studies with internal validity evaluated home care for 5 specific health conditions (hip fracture, hip replacement, chronic obstructive pulmonary disease [COPD], hysterectomy and knee replacement); 2 of the studies also evaluated home care for various medical and surgical conditions combined. Compared with hospital care, home care had no notable effects on patients'' or caregivers'' health. Social costs were not reported for hip fracture. They were unaffected for hip and knee replacement, and higher for COPD and hysterectomy; in the 2 studies of various conditions combined, social costs were higher in one and lower in the other. Effects on health system costs were mixed, with overall cost savings for hip fracture and higher costs for hip and knee replacement. INTERPRETATION: The limited existing evidence indicates that, compared with hospital care, acute home care produces no notable difference in health outcomes. The effects on social and health system costs appear to vary with condition. More well-designed evaluations are needed to determine the appropriate use of acute home care.     

Pharmacogenetics in Primary Care: The Promise of Personalized Medicine and the Reality of Racial Profiling

Many anticipate that expanding knowledge of genetic variations associated with disease risk and medication response will revolutionize clinical medicine, making possible genetically based Personalized Medicine where health care can be tailored to individuals, based on their genome scans. Pharmacogenetics has received especially strong interest, with many pharmaceutical developers avidly working to identify genetic variations associated with individual differences in drug response. While clinical applications of emerging genetic knowledge are becoming increasingly available, genetic tests for drug selection are not as yet widely accessible, and many primary care clinicians are unprepared to interpret genetic information. We conducted interviews with 58 primary care clinicians, exploring how they integrate emerging pharmacogenetic concepts into their practices. We found that in their current practices, pharmacogenetic innovations have not led to individually tailored treatment, but instead have encouraged use of essentialized racial/ethnic identity as a proxy for genetic heritage. Current manifestations of Personalized Medicine appear to be reinforcing entrenched notions of inherent biological differences between racial groups, and promoting the belief that racial profiling in health care is supported by cutting-edge scientific authority. Our findings raise concern for how pharmacogenetic innovations will actually affect diverse populations, and how unbiased treatment can be assured.     

The Impact of Clinical Social Franchising on Health Services in Low- and Middle-Income Countries: A Systematic Review

Background

The private sector plays a large role in health services delivery in low- and middle-income countries; yet significant gaps remain in the quality and accessibility of private sector services. Clinical social franchising, which applies the commercial franchising model to achieve social goals and improve health care, is increasingly used in developing countries to respond to these limitations. Despite the growth of this approach, limited evidence documents the effect of social franchising on improving health care quality and access.

Objectives and Methods

We examined peer-reviewed and grey literature to evaluate the effect of social franchising on health care quality, equity, cost-effectiveness, and health outcomes. We included all studies of clinical social franchise programs located in low- and middle-income countries. We assessed study bias using the WHO-Johns Hopkins Rigour Scale and used narrative synthesis to evaluate the findings.

Results

Of 113 identified articles, 23 were included in this review; these evaluated a small sample of franchises globally and focused on reproductive health franchises. Results varied widely across outcomes and programs. Social franchising was positively associated with increased client volume and client satisfaction. The findings on health care utilization and health impact were mixed; some studies find that franchises significantly outperform other models of health care, while others show franchises are equivalent to or worse than other private or public clinics. In two areas, cost-effectiveness and equity, social franchises were generally found to have poorer outcomes.

Conclusions

Our review indicates that social franchising may strengthen some elements of private sector health care. However, gaps in the evidence remain. Additional research should include: further documentation of the effect of social franchising, evaluating the equity and cost-effectiveness of this intervention, and assessing the role of franchising within the context of the greater healthcare delivery system.     

Genetics in public health: Rarely explored

The availability and the integration of genetic information into our understanding of normal and abnormal growth and development are driving important changes in health care. These changes have fostered the hope that the availability of genetic information will promote a better understanding of disease etiology and permit early, even pre-symptomatic diagnosis and preventive intervention to avoid disease onset. Hence, our aim was to review and provide the insight into the role of genetics in public health and its scope as well as barriers. The use of genetics along with their goals and essential public health functions are discussed. From the era of eugenics to the present era, this area has seen many turns in which geneticists have put through their effort to tie together the strings of both molecular genetics and public health. Though still the dark clouds of eugenics, the predictive power of genes, genetic reductionism, non-modifiable risk factors, individuals or populations, resource allocation, commercial imperative, discrimination and understanding and education are hanging above. The technological and scientific advances that have fundamentally changed our perception of human diseases fuel the expectations for this proactive health.     

Personalised Medicine: A Critique on the Future of Health Care

In recent years we have seen the emergence of “personalised medicine.” This development can be seen as the logical product of reductionism in medical science in which disease is increasingly understood in molecular terms. Personalised medicine has flourished as a consequence of the application of neoliberal principles to health care, whereby a commercial and social need for personalised medicine has been created. More specifically, personalised medicine benefits from the ongoing commercialisation of the body and of genetic knowledge, the idea that health is defined by genetics, and the emphasis the state places on individual citizens as being “responsible for” their own health. In this paper I critique the emergence of personalised medicine by examining the ways in which it has already impacted upon health and health care delivery.     

Genetic testing and insurance. The Ad Hoc Committee on Genetic Testing/Insurance Issues.

The rapid expansion of opportunities for genetic testing has been accompanied by complex questions about the appropriate relationships between providers, patients, and insurers. Some of these questions involve large public-policy decisions, such as whether the government should guarantee access to health care for all citizens. Universal access to health care, without regard to past, present, or future risk of disease, could eliminate risk-oriented underwriting in health-care coverage. A positive response to that question will ameliorate other problems. Until universal access is reality, genetic testing and genetic diagnosis will raise important issues for the practicing geneticist. How much does a client need to know about insurance implications before consenting to a genetic test? Should patients be counseled to purchase insurance before being tested? Should genetic information be excluded from medical records before their release to insurance companies for routine reimbursements or underwriting? What are the ethical and legal responsibilities of the geneticist?     

Effects of psychosocial support interventions on survival in inpatient and outpatient healthcare settings: A meta-analysis of 106 randomized controlled trials

BackgroundHospitals, clinics, and health organizations have provided psychosocial support interventions for medical patients to supplement curative care. Prior reviews of interventions augmenting psychosocial support in medical settings have reported mixed outcomes. This meta-analysis addresses the questions of how effective are psychosocial support interventions in improving patient survival and which potential moderating features are associated with greater effectiveness.Methods and findingsWe evaluated randomized controlled trials (RCTs) of psychosocial support interventions in inpatient and outpatient healthcare settings reporting survival data, including studies reporting disease-related or all-cause mortality. Literature searches included studies reported January 1980 through October 2020 accessed from Embase, Medline, Cochrane Library, CINAHL, Alt HealthWatch, PsycINFO, Social Work Abstracts, and Google Scholar databases. At least 2 reviewers screened studies, extracted data, and assessed study quality, with at least 2 independent reviewers also extracting data and assessing study quality. Odds ratio (OR) and hazard ratio (HR) data were analyzed separately using random effects weighted models. Of 42,054 studies searched, 106 RCTs including 40,280 patients met inclusion criteria. Patient average age was 57.2 years, with 52% females and 48% males; 42% had cardiovascular disease (CVD), 36% had cancer, and 22% had other conditions. Across 87 RCTs reporting data for discrete time periods, the average was OR = 1.20 (95% CI = 1.09 to 1.31, p < 0.001), indicating a 20% increased likelihood of survival among patients receiving psychosocial support compared to control groups receiving standard medical care. Among those studies, psychosocial interventions explicitly promoting health behaviors yielded improved likelihood of survival, whereas interventions without that primary focus did not. Across 22 RCTs reporting survival time, the average was HR = 1.29 (95% CI = 1.12 to 1.49, p < 0.001), indicating a 29% increased probability of survival over time among intervention recipients compared to controls. Among those studies, meta-regressions identified 3 moderating variables: control group type, patient disease severity, and risk of research bias. Studies in which control groups received health information/classes in addition to treatment as usual (TAU) averaged weaker effects than those in which control groups received only TAU. Studies with patients having relatively greater disease severity tended to yield smaller gains in survival time relative to control groups. In one of 3 analyses, studies with higher risk of research bias tended to report better outcomes. The main limitation of the data is that interventions very rarely blinded personnel and participants to study arm, such that expectations for improvement were not controlled.ConclusionsIn this meta-analysis, OR data indicated that psychosocial behavioral support interventions promoting patient motivation/coping to engage in health behaviors improved patient survival, but interventions focusing primarily on patients’ social or emotional outcomes did not prolong life. HR data indicated that psychosocial interventions, predominantly focused on social or emotional outcomes, improved survival but yielded similar effects to health information/classes and were less effective among patients with apparently greater disease severity. Risk of research bias remains a plausible threat to data interpretation.

In a meta-analysis, Timothy Smith and colleagues study trials of the effectiveness of psychosocial support interventions for improving inpatient and outpatient survival.     

Risk reduction and health promotion behaviors following genetic testing for adult-onset disorders

Although clinical genetic testing is available for over 1,000 inherited disorders, consequences of predictive genetic testing have been most extensively examined for hereditary breast and ovarian cancer (HBOC), hereditary colon cancer, and Huntington disease (HD). These focus primarily on psychological, ethical, legal, and social aspects of genetic testing. Genetic testing may also provide information that can lead to behaviors that promote health and reduce risk for disease, reflecting options available for the disorder for which the person is at risk. However, regardless of condition, people completing a genetic test may inform relatives about the results of the test and implications for their risk to develop the condition. Literature on risk reduction behaviors and communication focuses on families with HBOC or colorectal cancer. Few reports document behaviors for other conditions. This paper presents a systematic review of the research literature on risk reduction and health promotion behaviors following clinical genetic testing for adult onset conditions, primarily HBOC, familial colon cancers, and HD. Insights gleaned from this review are discussed as a basis for planning monitoring of health promotion and risk-reduction behaviors for genetic testing for present and future use.     

Socioeconomic status and health communication inequalities in Japan: a nationwide cross-sectional survey

Background

Considerable evidence suggests that communication inequality is one potential mechanism linking social determinants, particularly socioeconomic status, and health inequalities. This study aimed to examine how dimensions of health communication outcomes (health information seeking, self-efficacy, exposure, and trust) are patterned by socioeconomic status in Japan.

Methods

Data of a nationally representative cross-sectional survey of 2,455 people aged 15–75 years in Japan were used for secondary analysis. Measures included socio-demographic characteristics, subjective health, recent health information seeking, self-efficacy in seeking health information, and exposure to and trust in health information from different media.

Results

A total of 1,311 participants completed the questionnaire, giving a response rate of 53.6%. Multivariate logistic regression revealed that education and household income, but not employment, were significantly associated with health information seeking and self-efficacy. Socioeconomic status was not associated with exposure to and trust in health information from mass media, but was significantly associated with health information from healthcare providers and the Internet.

Conclusion

Health communication outcomes were patterned by socioeconomic status in Japan thus demonstrating the prevalence of health communication inequalities. Providing customized exposure to and enhancing the quality of health information by considering social determinants may contribute to addressing social disparities in health in Japan.     

Getting a head start: the importance of personal genetics education in high schools

With advances in sequencing technology, widespread and affordable genome sequencing will soon be a reality. However, studies suggest that "genetic literacy" of the general public is inadequate to prepare our society for this unprecedented access to our genetic information. As the current generation of high school students will come of age in an era when personal genetic information is increasingly utilized in health care, it is of vital importance to ensure these students understand the genetic concepts necessary to make informed medical decisions. These concepts include not only basic scientific knowledge, but also considerations of the ethical, legal, and social issues that will arise in the age of personal genomics. In this article, we review the current state of genetics education, highlight issues that we believe need to be addressed in a comprehensive genetics education curriculum, and describe our education efforts at the Harvard Medical School-based Personal Genetics Education Project.     

Implementation of Genetics to Personalize Medicine

Background: We stand on the verge of integrating individual genetic and genomic information into health care provision and maintenance to improve health, increase efficiency, and decrease costs. We are beginning to integrate information on inherited susceptibility, gene expression, and predicted pharmacogenomic response to refine our medical management.Objective: This article reviews the current utility of genetics and genomics in a wide array of clinical circumstances, considers the future applications, and defines some of the obstacles and potential solutions to clinical integration of genomic medicine.Methods: Using the search terms genetics, genomics, pharmacogenomics, newborn screening, long QT syndrome, BRCA1/BRCA2, maturity onset diabetes of youth, diabetes, hemochromatosis, coronary artery disease, copy number changes, genetic discrimination, and genetic education, the PubMed database was searched from January 2000 to March 2007 to identify pertinent articles. Search results were restricted to English-language and human studies.Results: Several areas of medicine have begun to incorporate genetics into clinical practice, including newborn screening and breast cancer risk stratification and treatment. Molecular genetic tests are, and will increasingly become, available for inherited arrhythmias, diabetes, cancer, coronary artery disease, and pharmacogenomics. However, there are many barriers to implementation, including the cost of testing, the genetic literacy of patients and health care providers, and concerns about genetic discrimination.Conclusion: Genetics and genomics will be increasingly utilized in every field of medicine; however, health care providers and patients must have realistic expectations about its predictive power and current limitations.     

Measuring and improving the quality of mental health care: a global perspective

Mental disorders are common worldwide, yet the quality of care for these disorders has not increased to the same extent as that for physical conditions. In this paper, we present a framework for promoting quality measurement as a tool for improving quality of mental health care. We identify key barriers to this effort, including lack of standardized information technology‐based data sources, limited scientific evidence for mental health quality measures, lack of provider training and support, and cultural barriers to integrating mental health care within general health environments. We describe several innovations that are underway worldwide which can mitigate these barriers. Based on these experiences, we offer several recommendations for improving quality of mental health care. Health care payers and providers will need a portfolio of validated measures of patient‐centered outcomes across a spectrum of conditions. Common data elements will have to be developed and embedded within existing electronic health records and other information technology tools. Mental health outcomes will need to be assessed more routinely, and measurement‐based care should become part of the overall culture of the mental health care system. Health care systems will need a valid way to stratify quality measures, in order to address potential gaps among subpopulations and identify groups in most need of quality improvement. Much more attention should be devoted to workforce training in and capacity for quality improvement. The field of mental health quality improvement is a team sport, requiring coordination across different providers, involvement of consumer advocates, and leveraging of resources and incentives from health care payers and systems.     

Mechanisms that Trigger a Good Health-Care Response to Intimate Partner Violence in Spain. Combining Realist Evaluation and Qualitative Comparative Analysis Approaches

BackgroundHealth care professionals, especially those working in primary health-care services, can play a key role in preventing and responding to intimate partner violence. However, there are huge variations in the way health care professionals and primary health care teams respond to intimate partner violence. In this study we tested a previously developed programme theory on 15 primary health care center teams located in four different Spanish regions: Murcia, C Valenciana, Castilla-León and Cantabria. The aim was to identify the key combinations of contextual factors and mechanisms that trigger a good primary health care center team response to intimate partner violence.MethodsA multiple case-study design was used. Qualitative and quantitative information was collected from each of the 15 centers (cases). In order to handle the large amount of information without losing familiarity with each case, qualitative comparative analysis was undertaken. Conditions (context and mechanisms) and outcomes, were identified and assessed for each of the 15 cases, and solution formulae were calculated using qualitative comparative analysis software.ResultsThe emerging programme theory highlighted the importance of the combination of each team’s self-efficacy, perceived preparation and women-centredness in generating a good team response to intimate partner violence. The use of the protocol and accumulated experience in primary health care were the most relevant contextual/intervention conditions to trigger a good response. However in order to achieve this, they must be combined with other conditions, such as an enabling team climate, having a champion social worker and having staff with training in intimate partner violence.ConclusionsInterventions to improve primary health care teams’ response to intimate partner violence should focus on strengthening team’s self-efficacy, perceived preparation and the implementation of a woman-centred approach. The use of the protocol combined with a large working experience in primary health care, and other factors such as training, a good team climate, and having a champion social worker on the team, also played a key role. Measures to sustain such interventions and promote these contextual factors should be encouraged.     

The burden of genetic disease on inpatient care in a children's hospital

The important role of genetics in pediatric illness has been increasingly recognized, but the true impact has not been well delineated. An important study of pediatric inpatient admissions to a children's hospital in 1978 found a genetic basis for disease in just less than half of admitted patients. We sought to update this study in light of current hospitalization practices and new knowledge about genetics. We systematically reviewed the records of 5,747 consecutive admissions (4,224 individuals), representing 98% of patients admitted in 1996 to Rainbow Babies and Children's Hospital (Cleveland, OH). Each patient was assigned to one of five groups on the basis of the presence or absence of an underlying chronic medical condition and whether that condition had a genetic basis or susceptibility. An underlying disorder with a significant genetic component was found in 71% of admitted children. The vast majority (96%) of underlying chronic disorders in children in this study were either clearly genetic or had a genetic susceptibility. Total charges for 1996 were >$62 million, of which $50 million (81%) was accounted for by disorders with a genetic determinant. The 34% of admissions with clearly genetic underlying disorders accounted for 50% (>$31 million) of the total hospital charges. The mean length of stay was 40% longer for individuals with an underlying disease with a genetic basis than for those with no underlying disease. Charges and length of stay were similar for children with underlying chronic disorders, regardless of the cause. This study begins to quantify the enormous impact of genetic disease on inpatient pediatrics and the health care system. Additional study and frank public discourse are needed to understand the implications on the future health care workforce and on the utilization of health care resources.     

Incorporating short-term outcome information to predict long-term survival with discrete markers

In disease screening and prognosis studies, an important task is to determine useful markers for identifying high-risk subgroups. Once such markers are established, they can be incorporated into public health practice to provide appropriate strategies for treatment or disease monitoring based on each individual's predicted risk. In the recent years, genetic and biological markers have been examined extensively for their potential to signal progression or risk of disease. In addition to these markers, it has often been argued that short-term outcomes may be helpful in making a better prediction of disease outcomes in clinical practice. In this paper we propose model-free non-parametric procedures to incorporate short-term event information to improve the prediction of a long-term terminal event. We include the optional availability of a single discrete marker measurement and assess the additional information gained by including the short-term outcome. We focus on the semi-competing risk setting where the short-term event is an intermediate event that may be censored by the terminal event while the terminal event is only subject to administrative censoring. Simulation studies suggest that the proposed procedures perform well in finite samples. Our procedures are illustrated using a data set of post-dialysis patients with end-stage renal disease.     

Insurance and genetic testing: where are we now?

Basic research will spur development of genetic tests that are capable of presymptomatic prediction of disease, disability, and premature death in presently asymptomatic individuals. Concerns have been expressed about potential harms related to the use of genetic test results, especially loss of confidentiality, eugenics, and discrimination. Existing laws and administrative policies may not be sufficient to assure that genetic information is used fairly. To provide factual information and conceptual principles upon which sound social policy can be based, the Human Genome Initiative established an Ethical, Legal, and Social Issues Program. Among the first areas to be identified as a priority for study was insurance. This paper provides a review of life, health, and disability insurance systems, including basic principles, risk classification, and market and regulatory issues, and examines the potential impact of genetic information on the insurance industry.     

Genetics and prevention: a policy in the making

Abstract

This article explores the processes through which the advances of genetic research are incorporated into public health care in Denmark. Drawing on ethnographic fieldwork in cancer genetic counselling, the implementation of new medical advances is investigated by following the establishment of a policy on informing relatives at risk of hereditary cancer. This case material provides the occasion to examine how policies are shaped in a governmental process through which different actors seek to establish a common goal for a specific health practice. The struggle to define such a goal implies a struggle to define where to draw the line between health and disease and what makes up a healthy person in the context of genetic knowledge. The authors argue that in the process of establishing a policy in the field of cancer genetics the imperative of prevention comes to provide the framework within which an ethics of rights and responsibilities is constituted and the target group of cancer genetic counselling defined. This ethics is not determined by or inherent in genetic technology itself, but constituted in a social process and therefore negotiated within pre-existing frameworks of understanding in professional practice.