Undermining patient and public engagement and limiting its impact:the consequences of the Health and Social Care Act 2012 on collective patient and public involvement

Patient and public involvement has been at the heart of UK health policy for more than two decades. This commitment to putting patients at the heart of the British National Health Service (NHS) has become a central principle helping to ensure equity, patient safety and effectiveness in the health system. The recent Health and Social Care Act 2012 is the most significant reform of the NHS since its foundation in 1948. More radically, this legislation undermines the principle of patient and public involvement, public accountability and returns the power for prioritisation of health services to an unaccountable medical elite. This legislation marks a sea-change in the approach to patient and public involvement in the UK and signals a shift in the commitment of the UK government to patient-centred care. © 2013 John Wiley & Sons Ltd.

Transfer of patients from health care centres to special care services:analysis of travel distances in Nordic countries

Objectives: This paper highlights the importance of analysing patient transportation in Nordic circumpolar areas. The research questions we asked are as follows: How many Finnish patients have been transferred to special care intra-country and inter-country in 2009? Does it make any difference to health care policymakers if patients are transferred inter-country? Study design: We analysed the differences in distances from health care centres to special care services within Finland, Sweden and Norway and considered the health care policy implica tions. Methods: An analysis of the time required to drive between service providers using the "Google distance meter" (http://maps.google.com/); conducting interviews with key Finnish stakeholders; and undertaking a quantitative analyses of referral data from the Lapland Hospital District. Results: Finnish patients are generally not transferred for health care services across national borders even if the distances are shorter. Conclusion: Finnish patients have limited access to health care services in circumpolar are as across the Nordic countries for 2 reasons. First, health professionals in Norway and Sweden do not speak Finnish, which presents a language problem. Second, The Social Insurance Institution of Finland does not cover the expenditures of travel or the costs of medicine. In addition, it seems that in circumpolar areas the density of Finnish service providers is greater than Swedish ones, causing many Swedish citizens to transfer to Finnish health care providers every year. However, future research is needed to determine the precise reasons for this.

A Semantic-Oriented Architecture of a Functional Module for Personalized and Adaptive Access to the Knowledge in a Multimedia Digital Library

This article presents the principal results of the doctoral thesis “Semantic-oriented Architecture and Models for Personalized and Adaptive Access to the Knowledge in Multimedia Digital Library” by Desislava Ivanova Paneva-Marinova (Institute of Mathematics and Informatics), successfully defended before the Specialised Academic Council for Informatics and Mathematical Modelling on 27 October, 2008.

An evaluation of depression, self-efficacy, satisfaction with life and perceived access to medical care across stages of HIV infection

This survey was designed to identify the incidence and scope of depression, satisfaction with life, self-efficacy and perceived access to medical care for those who are infected with the HIV virus. It also determined whether or not factors such as sexual orientation, ethnicity and socioeconomic status are intervening variables with respect to mental health issues. Subjects were recruited through a purposive sample from South Florida. A total of 871 surveys were used in the analysis. The overall response rate was nearly 90%. The incidence of depression was found to be higher than 75% across all stages of HIV infection. Furthermore, the incidence of depression increased as HIV disease progressed. Satisfaction with life and for the most part, self efficacy were found to decrease slightly as HIV disease progressed. Significant variance in depression, life satisfaction and self efficacy were found across stages of HIV infection. No significant differences between groups that were HIV infected were found for depression, life satisfaction and self efficacy. The severity of depression was found to vary significantly with self efficacy, life satisfaction and access to medical care but not with socioeconomic status. Life satisfaction was found to vary significantly with socioeconomic status, depression and self efficacy but not with access to medical care. Self-efficacy was found to vary significantly with socioeconomic status, depression and life satisfaction but not with access to medical care. Gender and ethnicity were not found to be significant precedent variables in depression for HIV infected individuals. Sexual orientation was found to be a significant precedent variable for depression, life satisfaction and self efficacy.

Toothache and social and economic conditions among adolescents in Northeastern Brazil

O objetivo deste estudo foi relacionar dor de dente com condição socioeconômica, acesso aos serviços de saúde bucal e estilo de vida em adolescentes do município de Sobral, Ceará, desenvolvido com delineamento transversal analítico, com amostra composta por 688 indivíduos. A prevalência de dor de dente no grupo pesquisado foi de 31,8%. Para avaliar a relação entre as variáveis independentes e a dor de dente, realizou-se teste de associação pelo qui-quadrado, estimando-se a razão de prevalências por meio da regressão de Poisson. Os fatores que mais demonstraram relação com a dor de dente foram severidade da cárie, motivo do atendimento odontológico relacionado com urgência, frequência ao dentista e recebimento de escova na escola. Observou-se que a alta prevalência de dor de dente em adolescentes está diretamente relacionada às condições de acesso, assim como às características das ações desenvolvidas pelos serviços de saúde. Assim como há necessidade da implantação de serviços vinculados à promoção de saúde, pautados pela equidade e integralidade, é necessária a implantação de serviços de urgência que não simplesmente intervenham na dor de forma mutiladora, mas a encarem como mecanismo de estímulo ao desenvolvimento de procedimentos de prevenção das doenças bucais.

Role of patient factors, preferences, and distrust in health care and access to liver transplantation and organ donation.

Despite major improvements in access to liver transplantation (LT), disparities remain. Little is known about how distrust in medical care, patient preferences, and the origins shaping those preferences contribute to differences surrounding access. We performed a single-center, cross-sectional survey of adults with end-stage liver disease and compared responses between LT listed and nonlisted patients as well as by race. Questionnaires were administered to 109 patients (72 nonlisted; 37 listed) to assess demographics, health care system distrust (HCSD), religiosity, and factors influencing LT and organ donation (OD). We found that neither HCSD nor religiosity explained differences in access to LT in our population. Listed patients attained higher education levels and were more likely to be insured privately. This was also the case for white versus black patients. All patients reported wanting LT if recommended. However, nonlisted patients were significantly less likely to have discussed LT with their physician or to be referred to a transplant center. They were also much less likely to understand the process of LT. Fewer blacks were referred (44.4% versus 69.7%; P = 0.03) or went to the transplant center if referred (44.4% versus 71.1%; P = 0.02). Fewer black patients felt that minorities had as equal access to LT as whites (29.6% versus 57.3%; P < 0.001). For OD, there were more significant differences in preferences by race than listing status. More whites indicated OD status on their driver's license, and more blacks were likely to become an organ donor if approached by someone of the same cultural or ethnic background (P < 0.01). In conclusion, our analysis demonstrates persistent barriers to LT and OD. With improved patient and provider education and communication, many of these disparities could be successfully overcome. Liver Transplantation 22 895-905 2016 AASLD.

Primary Health Care Providers' Perspectives: Facilitating Older Patients' Access to Community Support Services

The purpose of the study examined in this article was to understand how non-physician health care professionals working in Canadian primary health care settings facilitate older persons’ access to community support services (CSSs). The use of CSSs has positive impacts for clients, yet they are underused from lack of awareness. Using a qualitative description approach, we interviewed 20 health care professionals from various disciplines and primary health care models about the processes they use to link older patients to CSSs. Participants collaborated extensively with interprofessional colleagues within and outside their organizations to fi nd relevant CSSs. They actively engaged patients and families in making these linkages and ensured follow-up. It was troubling to fi nd that they relied on out-of-date resources and ineffi cient search strategies to fi nd CSSs. Our fi ndings can be used to develop resources and approaches to better support primary health care providers in linking older adults to relevant CSSs. 

Action Plan: Policy for the Provision and Management of Cleaning Services in the Health and Social Care Sector (PDF 14KB)

Action Plan regarding the Cleaning Services Policy in the Health and Social Care Sector

What is best for Esther? Building improvement coaching capacity with and for users in health and social Care-A case study

While coaching and customer involvement can enhance the improvement of health and social care, many organizations struggle to develop their improvement capability; it is unclear how best to accomplish this. We examined one attempt at training improvement coaches. The program, set in the Esther Network for integrated care in rural Jonkoping County, Sweden, included eight 1-day sessions spanning 7 months in 2011. A senior citizen joined the faculty in all training sessions. Aiming to discern which elements in the program were essential for assuming the role of improvement coach, we used a case-study design with a qualitative approach. Our focus group interviews included 17 informants: 11 coaches, 3 faculty members, and 3 senior citizens. We performed manifest content analysis of the interview data. Creating will, ideas, execution, and sustainability emerged as crucial elements. These elements were promoted by customer focusembodied by the senior citizen trainershared values and a solution-focused approach, by the supportive coach network and by participants' expanded systems understanding. These elements emerged as more important than specific improvement tools and are worth considering also elsewhere when seeking to develop improvement capability in health and social care organizations.

Evaluating health policy and legal responses : how to reduce barriers and improve access to orphan drugs for rare diseases in Canada

Abstract : Rare diseases are debilitating conditions often leading to severe clinical manifestations for affected patients. Orphan drugs have been developed to treat these rare diseases affecting a small number of individuals. Incentives in the legal framework aimed to recoup the research and development cost of orphan drugs for pharmaceutical companies have been implemented in the United States and the European Union. At the present time, Canada is still lacking a legal and policy framework for orphan drugs. Several problems at the federal and provincial levels remain: lack of research funds for rare diseases, discrepancies on orphan drug policies between provinces, difficulties to access and reimburse these high price drugs. Recommendations and measures are proposed, such as a pan-Canadian (national) scientific committee to establish evidence-based guidelines for patients to access orphan drugs uniformly in all provinces with a disease specific registry, a formal agreement for a centralized Canadian public funding reimbursement procedure, and increasing the role of “guardian” for prices by the Patented Medicines Review Board in Canada. These recommendations and measures will be beneficial for the implementation of a policy framework for orphan drugs in Canada.

Usefulness of social tagging in organizing and providing access to the web: An analysis of indexing consistency and quality

This dissertation research points out major challenging problems with current Knowledge Organization (KO) systems, such as subject gateways or web directories: (1) the current systems use traditional knowledge organization systems based on controlled vocabulary which is not very well suited to web resources, and (2) information is organized by professionals not by users, which means it does not reflect intuitively and instantaneously expressed users’ current needs. In order to explore users’ needs, I examined social tags which are user-generated uncontrolled vocabulary. As investment in professionally-developed subject gateways and web directories diminishes (support for both BUBL and Intute, examined in this study, is being discontinued), understanding characteristics of social tagging becomes even more critical. Several researchers have discussed social tagging behavior and its usefulness for classification or retrieval; however, further research is needed to qualitatively and quantitatively investigate social tagging in order to verify its quality and benefit. This research particularly examined the indexing consistency of social tagging in comparison to professional indexing to examine the quality and efficacy of tagging. The data analysis was divided into three phases: analysis of indexing consistency, analysis of tagging effectiveness, and analysis of tag attributes. Most indexing consistency studies have been conducted with a small number of professional indexers, and they tended to exclude users. Furthermore, the studies mainly have focused on physical library collections. This dissertation research bridged these gaps by (1) extending the scope of resources to various web documents indexed by users and (2) employing the Information Retrieval (IR) Vector Space Model (VSM) - based indexing consistency method since it is suitable for dealing with a large number of indexers. As a second phase, an analysis of tagging effectiveness with tagging exhaustivity and tag specificity was conducted to ameliorate the drawbacks of consistency analysis based on only the quantitative measures of vocabulary matching. Finally, to investigate tagging pattern and behaviors, a content analysis on tag attributes was conducted based on the FRBR model. The findings revealed that there was greater consistency over all subjects among taggers compared to that for two groups of professionals. The analysis of tagging exhaustivity and tag specificity in relation to tagging effectiveness was conducted to ameliorate difficulties associated with limitations in the analysis of indexing consistency based on only the quantitative measures of vocabulary matching. Examination of exhaustivity and specificity of social tags provided insights into particular characteristics of tagging behavior and its variation across subjects. To further investigate the quality of tags, a Latent Semantic Analysis (LSA) was conducted to determine to what extent tags are conceptually related to professionals’ keywords and it was found that tags of higher specificity tended to have a higher semantic relatedness to professionals’ keywords. This leads to the conclusion that the term’s power as a differentiator is related to its semantic relatedness to documents. The findings on tag attributes identified the important bibliographic attributes of tags beyond describing subjects or topics of a document. The findings also showed that tags have essential attributes matching those defined in FRBR. Furthermore, in terms of specific subject areas, the findings originally identified that taggers exhibited different tagging behaviors representing distinctive features and tendencies on web documents characterizing digital heterogeneous media resources. These results have led to the conclusion that there should be an increased awareness of diverse user needs by subject in order to improve metadata in practical applications. This dissertation research is the first necessary step to utilize social tagging in digital information organization by verifying the quality and efficacy of social tagging. This dissertation research combined both quantitative (statistics) and qualitative (content analysis using FRBR) approaches to vocabulary analysis of tags which provided a more complete examination of the quality of tags. Through the detailed analysis of tag properties undertaken in this dissertation, we have a clearer understanding of the extent to which social tagging can be used to replace (and in some cases to improve upon) professional indexing.

Impact of dental caries on quality of life of adolescents according to access to oral health services: a cross sectional study

Aim: This study presents the prevalence of dental caries and its relation to the quality of life of adolescents according to the access to dental health services. Methods: Two hundred and fifty-six adolescents between 15 and 19 years of age participated in the study; they were all enrolled in public schools in a countryside municipality of the São Paulo State. Data related to dental caries were evaluated by the DMFT Index, and OHIP-14 was used for evaluating the quality of life. Mann Whitney and Spearmann correlation tests were also used (p<0.05). Results: A DMFT of 3.09 (±3.30) was found with a higher prevalence among the adolescents who used public dental services (3.43±3.34) compared with those who used private services (2.94±3.28). A statistically significant relationship between the decay component of DMFT with physical pain (0.020), physical disability (0.002) and quality of life (0.017) was verified. Conclusions: A low prevalence of dental caries was observed, and it was higher in adolescents who used public oral health services rather than private ones, evidencing the low influence of oral health on the quality of life of the participants.

Health Status, Living Arrangements, and Service Use at 100: Findings From the Oporto Centenarian Study

This paper describes the sociodemographic characteristics, health status, and service use of centenarians living in the community and centenarians residing in an elder care facility/nursing home and examines their main differences. Participants were 140 centenarians from the population-based Oporto Centenarian Study (Mage = 101.2; SD = 1.6). Main findings revealed that the majority of the centenarians lived at home with their family members (57.9%). Increased health care needs, living alone, and family caregiving constraints were the most common reasons for entering a nursing home. Community-dwelling centenarians were cared for mostly by their children and were less dependent and in better cognitive health than those who resided in a nursing home. Differences were found in the pattern of health service use according to the centenarians' residence, ability to pay medical expenses, and dependency level. Findings highlight the need for an accurate assessment of caregiving support systems, particularly family intergenerational duties, and of the factors constraining the access and use of health and social services. Policy makers may be guided by the insights gained from this research and work toward improvement of support options and removal of barriers to service access.