Improving public health by respecting autonomy: Using social science research to enfranchise vulnerable prison populations

It is widely recognised that prisoners constitute a vulnerable population that is subject to numerous health inequalities and merits special protection. Improving prisoners' access to healthcare by ensuring adherence to the principle of equivalence has been the main focus of efforts to ensure that their health is not jeopardised. However, another means of respecting prisoners' autonomy and improving their health is to involve them (and prison staff) in social science research within prisons. Such research not only produces valuable data which can be used to assess whether the principle of equivalence is being respected; it also enfranchises prisoners by allowing them to air concerns about perceived ill-treatment and influence their environment. If prison authorities enable such research and adjust policy accordingly, both they and prisoners will benefit from the increased level of respect for prisoners' autonomy, and the improvements in individual and public health that flow from this. Conducting social science research in prisons enables the creation of a virtuous cycle of respect that makes prisons safer and healthier places.     

Delivering HIV services to vulnerable populations: an evaluation and research agenda

In May 2000, the HIV/AIDS Bureau of the Health Resources and Services Administration convened HIV experts from throughout the country to identify new and emerging areas of research needed to guide policy and programmatic decisions on HIV service delivery to vulnerable populations. This article describes the process used to develop an evaluation/research agenda, discusses key findings and recommendations of the conference, and proposes a set of principles to guide the design and conduct of future investigations. Conference participants identified nine major evaluation/research themes that span the continuum of HIV behavioral prevention services and treatment. They recommended focusing future research on questions relevant to populations experiencing rapid rates of increase in HIV infection (for example, women, people of color, and adolescents and young adults) and considering explanatory factors at multiple levels of analysis (individual, clinician, organization, service delivery system, and environment).     

Delivering HIV services to vulnerable populations: a review of CARE Act-funded research

This article summarizes key findings from evaluation and research studies that have received financial support from the HIV/AIDS Bureau of the Health Resources and Services Administration or from Ryan White Comprehensive AIDS Resources Emergency (CARE) Act grantees. These studies suggest that the CARE Act has improved but not equalized service accessibility, quality, and outcomes for different populations living with HIV disease. Evaluations of access to highly active antiretroviral therapy (HAART) found that uninsured patients, women, people of color, and injection drug users waited much longer than others to receive the new therapies. These disparities were not uniform across study sites, suggesting that clinic characteristics and geographic location have a major influence on prescribing patterns. Once patients gained access to HAART, health insurance status made little difference in clinical outcomes.     

Does the new EU Regulation on clinical trials adequately protect vulnerable research participants?

Vulnerable research participants deserve special protection because of their increased risks of being wronged. Yet, paradoxically, the conduct of trials involving vulnerable groups is sometimes inescapable to develop safe and efficient therapies suitable to these groups. The key question is therefore how to protect vulnerable research participants from harm and exploitation without excluding the populations they belong to from the benefits of research. The European Union faced this challenge in April 2014 when adopting the new Regulation on clinical trials, which will replace the currently applicable 2001 Clinical Trials Directive in 2016. In order to assess the protection of vulnerable persons in the new Regulation, this paper makes four suggestions: first, the need to adopt a risk-based approach to vulnerability in biomedical research; second, to better distinguish between decisional vulnerabilities and health-related vulnerabilities; third, to emphasise the need to preserve the freedom of consent of subjects with decisional vulnerability, who are more susceptible to undue influence; and finally to assert the need of actively promoting specific clinical trials involving people with physical or psychological vulnerabilities. In conclusion, this paper claims that the protection of vulnerable subjects still needs to be improved in the new EU Regulation.     

Managing research evidence to inform action: Influencing HIV policy to protect marginalised populations in Pakistan

Abstract

Our aim was to demonstrate that an understanding of the process of how research may (or may not) influence policy and practice is crucial to leverage research findings and bring about evidence-informed policy and its implementation. We describe a process of research design and execution, based on theories of the relationship between evidence and public policy-making, which sought to improve the uptake of evidence into the HIV policy-making process in Pakistan. We designed and implemented specific strategies in research methods, management and dissemination to increase the policy influence by recommendations from a multi-disciplinary research project. Research to policy is complex, rarely linear and causal attribution is problematic. Nonetheless, we believe that, in part, some of the current changes in HIV policy and practice in Pakistan may be due to the managed process of research influence. We offer four key recommendations for those concerned with improving the chances of seeing their research incorporated into policy and practice – these are (1) involve stakeholders in research management; (2) set realistic expectations of research impact; (3) invest in long-term research–policy-maker relationships; and (4) build capacity of end users to use research to demand policy change.     

Managing research evidence to inform action: influencing HIV policy to protect marginalised populations in Pakistan

Abstract Our aim was to demonstrate that an understanding of the process of how research may (or may not) influence policy and practice is crucial to leverage research findings and bring about evidence-informed policy and its implementation. We describe a process of research design and execution, based on theories of the relationship between evidence and public policy-making, which sought to improve the uptake of evidence into the HIV policy-making process in Pakistan. We designed and implemented specific strategies in research methods, management and dissemination to increase the policy influence by recommendations from a multi-disciplinary research project. Research to policy is complex, rarely linear and causal attribution is problematic. Nonetheless, we believe that, in part, some of the current changes in HIV policy and practice in Pakistan may be due to the managed process of research influence. We offer four key recommendations for those concerned with improving the chances of seeing their research incorporated into policy and practice - these are (1) involve stakeholders in research management; (2) set realistic expectations of research impact; (3) invest in long-term research-policy-maker relationships; and (4) build capacity of end users to use research to demand policy change.     

Access to care among vulnerable populations enrolled in commercial HMOs

This cross-sectional study compares self-reported access to care among a representative sample of 13,952 HMO enrollees in New Jersey. Using multivariate logistic regression, this study found that compared with college graduates, those with less than a high school education reported more difficulty obtaining tests or treatment. Compared with whites, Hispanics were more likely to report difficulty seeing their primary care provider, and African Americans reported greater difficulty seeing a specialist and obtaining tests and treatment. Enrollees in poor health were more likely to report problems seeing a specialist and obtaining tests and treatment than enrollees in excellent health. Income was not a consistent predictor of access. Nonfinancial barriers appear to be more influential than financial barriers for predicting access problems in commercial HMOs. More work is needed to identify the source of nonfinancial barriers to care among vulnerable populations.     

Strategic use of communication to market cancer prevention and control to vulnerable populations

There are significant challenges to communicating relevant cancer prevention and control information to health care consumers due both to the complexities of the health information to be communicated and the complexities of health communication, especially with vulnerable populations. The need for effective communication about cancer risks, early detection, prevention, care, and survivorship is particularly acute, yet also tremendously complex, for reaching vulnerable populations, those groups of people who are most likely to suffer significantly higher levels of morbidity and mortality from cancers than other segments of the population. These vulnerable populations, typically the poorest, lowest educated, and most disenfranchised members of modern society, are heir to serious cancer-related health disparities. Vulnerable populations often have health literacy difficulties, cultural barriers, and economic challenges to accessing and making sense of relevant health information. This paper examines these challenges to communicating relevant information to vulnerable populations and suggests strategies for effectively using different communication media for marketing cancer prevention and control to reduce health disparities and promote public health.     

Vaccination of special populations: Protecting the vulnerable

One of the strategic objectives of the 2011–2020 Global Vaccine Action Plan is for the benefits of immunisation to be equitably extended to all people. This approach encompasses special groups at increased risk of vaccine-preventable diseases, such as preterm infants and pregnant women, as well as those with chronic and immune-compromising medical conditions or at increased risk of disease due to immunosenescence. Despite demonstrations of effectiveness and safety, vaccine uptake in these special groups is frequently lower than expected, even in developed countries with vaccination strategies in place. For example, uptake of the influenza vaccine in pregnancy rarely exceeds 50% in developed countries and, although data are scarce, it appears that only half of preterm infants are up-to-date with routine paediatric vaccinations. Many people with chronic medical conditions or who are immunocompromised due to disease or aging are also under-vaccinated. In the US, coverage among people aged 65 years or older was 67% for the influenza vaccine in the 2014–2015 season and 55–60% for tetanus and pneumococcal vaccines in 2013, while the coverage rate for herpes zoster vaccination among those aged 60 years or older was only 24%. In most other countries, rates are far lower. Reasons for under-vaccination of special groups include fear of adverse outcomes or illness caused by the vaccine, the inconvenience (and in some settings, cost) of vaccination and lack of awareness of the need for vaccination or national recommendations. There is also evidence that healthcare providers’ attitudes towards vaccination are among the most important influences on the decision to vaccinate. It is clear that physicians’ adherence to recommendations needs to be improved, particularly where patients receive care from multiple subspecialists and receive little or no care from primary care providers.     

Third sector primary care for vulnerable populations.

This paper aims to describe and explain the development of third sector primary care organisations in New Zealand. The third sector is the non-government, non-profit sector. International literature suggests that this sector fulfils an important role in democratic societies with market-based economies, providing services otherwise neglected by the government and private for-profit sectors. Third sector organisations provided a range of social services throughout New Zealand's colonial history. However, it was not until the 1980s that third sector organisations providing comprehensive primary medical and related services started having a significant presence in New Zealand. In 1994 a range of union health centres, tribally based M?ori health providers, and community-based primary care providers established a formal network -- Health Care Aotearoa. While not representing all third sector primary care providers in New Zealand, Health Care Aotearoa was the best-developed example of a grouping of third sector primary care organisations. Member organisations served populations that were largely non-European and lived in deprived areas, and tended to adopt population approaches to funding and provision of services. The development of Health Care Aotearoa has been consistent with international experience of third sector involvement -- there were perceived "failures" in government policies for funding primary care and private sector responses to these policies, resulting in lack of universal funding and provision of primary care and continuing patient co-payments. The principal policy implication concerns the role of the third sector in providing primary care services for vulnerable populations as a partial alternative to universal funding and provision of primary care. Such an alternative may be convenient for proponents of reduced state involvement in funding and provision of health care, but may not be desirable from the point of view of equity and social cohesion insofar as the role of the welfare state is diminished.     

Improving access to health care: case management for vulnerable children.

Health care providers are being confronted by a change in childhood morbidity from primarily physical problems to complex problems rooted in the social, family, and environmental conditions that accompany persistent urban poverty. The clustering of multiple problems in one family necessitates redefining preventive and treatment strategies. Yet the lack of coordination among federal, state and local service programs often exacerbates the vulnerability of these beleaguered children and families. Therapeutic case management is a powerful service coordination strategy for increasing access and improving the health of vulnerable children. An ongoing evaluation of one case management model at the Center for the Vulnerable Child at Children's Hospital in Oakland, California is described in this article. Process evaluation data show this model to be effective in improving comprehensiveness and continuity of care among participating families.