abstract: Hepatitis C is an infectious disease that affects 71 million people worldwide and causes liver failure and death if untreated. In 2013, a direct acting antiviral drug, sofosbuvir, revolutionized treatment of the disease. Sofosbuvir showed immense promise, but the high price point at which it was launched created access barriers that prevented it from reaching its full public health potential. By 2016, fewer than 1% of Hepatitis C patients worldwide had received treatment. In the United States (US), concerns about the cost of the drug led public and private payers to implement rationing and treatment restrictions that prevented some of the most vulnerable populations from accessing Hepatitis C treatment at all. Through interviews with researchers, patients and providers, and a literature review of grants, patents, papers, court documents, and news articles, I examine the history of sofosbuvir with attention to the ways in which federal funding practices and intellectual property law encouraged the high initial pricing of the drug. I then examine the impact of this drug on healthcare systems in the United States and abroad, and discuss how the fragmented nature of the United States healthcare system has exacerbated price-based barriers to access. Finally, I discuss intellectual property laws as potential mechanisms to increase access. My study underscores how the political reluctance to use well-established federal funding and intellectual property laws has resulted in a drug development system that delivers medications that are so highly priced that the fragmented US healthcare system cannot compensate for the expense. This leads to low access and poor public health outcomes, and a continued failure to contain or control diseases for which effective therapies exist. / Dissertation/Thesis / Doctoral Dissertation Biology 2020

Thesis advisor: Karen S. Lyons / Background: Health equity is a complex phenomenon that embodies both the social determinants of health (structural and intermediary) and external factors, such as the health system. As a well-researched phenomenon, it is known that certain populations are more vulnerable than others to experiencing health inequities; specifically, those of low socioeconomic status, racial/ethnic minorities, older adults, and rural residents. However, gaps in knowledge exist in understanding why certain populations remain at higher risk of experiencing health inequities during a time of improved health insurance coverage and technological advances in health care. The purpose of this manuscript dissertation was to identify and address influential factors that serve as road blocks in achieving health equity, guided by the World Health Organization’s Conceptual Framework on the Social Determinants of Health. Methods: First, an integrative review was performed in order to determine current scope of practice restrictions and patient outcomes across the continuum of licensure for advanced practice registered nurses (APRNs), especially certified registered nurse anesthetists (CRNAs). Next, a secondary analysis of large national data set was done to identify the social determinants and risk factors for poor health effect among a national sample at high risk for poor health. And finally, a survey methodology study was completed to determine the roles that satisfaction with health care and physical function have on the perceived health status for rural, older adults in Massachusetts, and to explore the willingness of rural, older adults to use non-physicians for their health care needs. Results: The integrative review revealed the inconsistent use of APRNs at their full licensure. Nationally, APRNs had better geographic distribution in rural areas compared to physicians; yet many states continue to restrict APRN SOP. Second, across the U.S., older adults at the highest risk for poor health live in rural areas, are of lower socioeconomic status, and identify as racial/ethnic minorities. Third, both satisfaction with health care and the physical function of a small sample of older rural adults were significantly associated with physical health. And finally this body of work found that among a small sample of older rural adults, most were willing to use APRNs to meet their health care needs. Conclusions: With the ultimate goal of health equity it is necessary to empower those experiencing health inequities to be both aware of the problems as well as informed enough to push for change. Understanding why the experience of health differs among some individuals more than others helps to target change. The fusion of findings from this body of research has revealed a gap in health care that can be easily filled with simple policy change. APRNs at full SOP can generate means for high quality preventative, cost-saving care, and can better access the most vulnerable populations at a lower cost than physician counterparts. / Thesis (PhD) — Boston College, 2020. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

No description available.

Abstract Background Measles is a serious infectious disease that contributes significantly to the burden of disease in many developing countries. In most developed nations, such as Canada, endemic transmission of measles has been declared eliminated thanks to rigorous vaccination programs, but isolated outbreaks of the disease continue to happen. Therefore, a thorough understanding of the factors contributing to these outbreaks is necessary. Objectives There were two main objectives of this thesis. The first objective was to assess the geospatial distribution of reported measles cases in Ontario with a goal of identifying clusters of reported measles. For this objective, the main hypothesis was that measles cases would not be randomly distributed across Ontario and instead would cluster in certain regions. The second objective was to explore some of the factors that may be associated with measles clusters. For this objective, the main hypothesis was that the proportion of immigrants, population density, low-income prevalence and education level would be associated with measles clusters. Methods The first objective was achieved through a thorough geospatial analysis using SaTScan and R. Individual forward sortation areas were used as the spatial unit of analysis. The analysis leveraged data from multiple sources: 2016 Census data, Ontario measles cases data from iPHIS from 2008 to 2019, a shapefile of all forward sortation areas in Canada from Statistics Canada and centroid coordinates of forward sortation areas that were obtained using web scrapping techniques on the geolocation service of Natural Resources Canada. The maximal window size of the geospatial analysis was chosen using the maximum clustering heterogeneous set-proportion technique. The geospatial analysis was run with 99,999 Monte Carlo repetitions under a Poisson distribution using the purely spatial analysis. The Ontario population from the 2016 Census was used as the population at risk. Any cluster with a p ≤ 0.05 was deemed statistically significant. The second objective was achieved through a case-control study: Forward sortation areas that were within statistically significant measles clusters were considered as cases and the rest of the forward sortation areas were considered as controls. Demographic data necessary to assess the factors of interest were extracted from the 2016 Census. A univariable logistic regression model was run to compute the odds ratio and test the association between the factors of interest and measles clusters. 95% confidence intervals were computed for each odds ratio. Data-curation techniques and data analysis were performed in R 4.0.4. Results From 2008 through 2019, 178 measles cases were identified. 82% of cases lacked necessary vaccination or vaccination records against measles, 35% of cases were linked to traveling outside of Ontario, 20% of cases reported being in contact with a known case, and 72% of cases were less than 5 years old or older than 21. Ten measles clusters were identified of which six were deemed statistically significant. These six significant clusters represented 7% of the population at risk but contained nearly 40% of all reported measles cases between 2008 and 2019. Measles clusters had a strong association with the proportion of immigrants living within them, population density and prevalence of low-income. No association was found between education level and measles clusters. Conclusion The results indicate that most measles cases in Ontario are unvaccinated or lack proof of vaccination; arise through secondary transmission within the province; arise from undetected transmission; and are adults or infants. Additionally, it is possible to see that the risk of reported measles cases is not randomly distributed across the province, but instead measles cases tend to cluster in certain regions. Such clusters tend to be characterized by specific population-level factors that may be contributing to the risk of reported measles. Targeted and equitable interventions are needed as we continue on the path to eradication.

Randomized trials and cohort studies have shown sex differences in the implantation and response to Cardiac Resynchronization Therapy (CRT). Furthermore, gender roles are associated with precipitants of congestive heart failure. Cohort studies are well-suited to assessing implantation rates, long-term outcomes, and the role of sex and gender. Therefore, we systematically identified cohort studies that reported outcomes of CRT and evaluated the following: 1) prevalence and temporal changes in sex and gender reporting and analysis; and 2) sex differences in the implantation and response to CRT. Sex was increasingly considered but remained inadequately reported and analyzed. Gender was not considered in the studies. In clinical practice, fewer women received devices, despite benefiting from CRT more than men. Of note, the difference in response may be confounded by differences in the clinical profiles of men and women. There is a need for better integration of sex and gender in studies to understand better the reasons leading to the observed differences.

Background: People who use drugs (PWUD) are disproportionately burdened by rates of HIV and Hepatitis C, more likely to experience stigma, social exclusion, and as a result, have poorer health outcomes. To mitigate these inequities in health, people with lived experience of drug use are, and should be, included in decisions that affect them. There is evidence that including PWUD in the development and delivery of harm reduction programs, services, and drug policy ensures such initiatives addresses their needs most effectively. As such, the purpose of this thesis is to present the findings of a scoping review of the peer-reviewed literature examining the involvement of people who use drugs (PWUD) in the development and delivery of harm reduction programs, services, and drug policy. Methods: Scoping reviews represent an increasingly popular method used to review the literature of a particular topic. It is a process of summarizing, or ‘mapping’, a range of evidence in order to convey the breadth and depth of a particular field. This scoping review implemented a search strategy focused on three categories: search terms that describe ‘peer engagement’, search terms that describe ‘substance use’ and finally search terms that describe ‘harm reduction programs/services/policy’. Searches of five academic electronic databases were conducted. Peer-reviewed literature published between 2010 and 2020 that discussed the involvement of PWUD in the development and/or delivery of harm reduction programs, services, or drug policy was included in the scoping review. Results: The search strategy produced a total of 1902 references. After duplicates were removed, thirty-two references met the inclusion criteria and were included for analysis. This scoping review identified five characteristics from each study: 1) type of study, 2) location of study, 3) year of publication, 4) type of engagement/participation, and 5) peer roles. Conclusion: One critical finding of this scoping review is the highest level of participation among PWUD was achieved when drug-user organizations were involved. / Graduate

Background Equity is rarely included in health economic evaluations, partly because the techniques for addressing equity have been inadequate. Since 2013 health economists have developed two competing health economic technologies: distributional costeffectiveness analysis (DCEA) and extended cost-effectiveness analysis (ECEA). Both technologies represent a significant advance, and each provides a framework to address equity considerations in cost-effectiveness analysis. Methods A scoping literature review was used to identify and synthesise the relevant literature on incorporating equity concerns into economic evaluations. A second focused review identified literature which discussed or applied DCEA and ECEA. Key themes in the literature were identified using NVivo qualitative data analysis software. Results The review revealed three key areas of difference between DCEA and ECEA: First, the analysis of trade-offs between improving health and reducing inequity; second, the analysis of financial impacts of health policies; and third, the incorporation of opportunity costs. ECEA can analyse financial risk protection while DCEA can analyse opportunity costs and trade-offs between improving equity and reducing health. ECEA is designed for low- and middle-income countries, whereas DCEA is better suited to developed health systems such as the National Health Service in the United Kingdom. To date, there have been 27 studies using ECEA and five studies using DCEA. Future developments for DCEA and ECEA include incorporating alternative methods to simplify the data requirements for the techniques, providing methods to assist decision makers to clarify their equity concerns, and improving the presentation of outcomes to make them accessible to non-specialists. Conclusions DCEA and ECEA are both economic frameworks which address equity considerations in cost-effectiveness analysis. This study examines and compares these two techniques in order to assist policymakers and decision makers to determine which of the two methods is best able to address their specific needs for their particular circumstances.

Despite the growing emphasis on collaboration in public health, there remains a dearth of literature providing tools for the evaluation of coalitions and councils. This study employed social network gap analysis as an evaluation tool. Survey data collected from the Southeastern Health Equity Council members were used to assess connections among members as a whole, by committee, by state, and by health specialty area. Analysis of how well Southeastern Health Equity Council met the representation outlined in its strategic plan was also conducted. Recommendations for improving the network and opportunities to effectively recruit and advance the work of Southeastern Health Equity Council are discussed.

Prior to the coronavirus disease-2019 (COVID-19) pandemic people with chronic obstructive pulmonary disease (COPD) were already experiencing social isolation due to the complex intersection of symptoms, and perceptions towards the illness. COPD is a chronic lung illness characterized by progressive shortness of breath, and decreasing lung function, with influenza and other respiratory illnesses more likely to have fatal consequences for this population. Societal beliefs and assumptions around behavioural risk factors, and in particular smoking, contribute to perceptions that COPD diagnosis, outcomes and experiences are self-inflicted and an individual responsibility. This is a perspective that fails to take into the account the complex contextual factors of the social determinants of health, where structural inequities result in higher smoking rates among populations with lower socioeconomic status. Further, these underlying societal values may compound the isolation experienced with COPD in which ongoing stigma towards the illness discourages people from identifying with a COPD diagnosis. The lack of identity may discourage developing a community where people can share experiences and strategies in living with COPD, and form a collective group that can advocate for change. Digital technologies (DTs), such as Facebook and Zoom offer new avenues to support social connectedness. However, little focus has been given on how people with COPD may (or may not) be using DTs to support their illness. This study explored the role DTs could serve in addressing social connectedness and experiences and outcomes for the COPD community. The study was informed by Mertens (2003, 2007) transformative approach where the knowledge of people living with COPD was prioritized in finding out what DTs they may be using to maintain social connectedness and to support their illness. The three stage mixed methods research design consisted of interviews, patient-reported outcome measures, patient-reported experience measures and a DT survey. Bazeley's (2018) approach was used to guide the integrative mixed analysis on data collected across the three stages. The overall findings were: 1) Participants’ experiences in living with COPD had uniquely prepared them for the COVID-19 pandemic, and it was the community that lacked capacity; 2) Dominant discourse around technology may be creating further harms to the COPD population that extend beyond the digital world; 3) Current digital health monitoring strategies for other chronic illnesses do not fully translate to the interests and needs for people living with COPD; 4) People living with COPD are using DTs, but prefer to keep their virtual world separate from their illness world; and 5) Considerations for DTs for COPD should move beyond managing outcomes, and include supporting experiences of living. Conducted between December 2018 and July 2020, and concurrent with the COVID-19 pandemic, the study demonstrated even greater importance with the onset of the pandemic in understanding how DTs may support social connectedness for people living with life-limiting chronic lung conditions. / Graduate / 2022-02-07

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