The surgical and hormonal management of intersexed children is a much more common component of pediatric care in Canada than many people realize. Intersex conditions, where noticeably atypical genitalia is deemed to require intervention, occurs in about 1:2000 live births. In the international context, driven by an increasingly well-organized coalition of intersexed people, the potentially harmful effects of these medical interventions are being debated. Proponents of standard treatment protocols justify genital surgeries with an in-the-best-interest-of-the-child rationale, claiming that to leave a child’s body in a state of sex ambiguity would inevitably lead to psychological harm and sexual maladjustment. Yet, no long-term follow up studies have been conducted to substantiate this claim. The delivery of current medical services is not structured in ways that allow for follow-up with intersexed adults, and much of the evidence from intersexed people themselves suggests that, in the long-term, the best interests of intersexed children are not protected. Many grow into adulthood feeling stigmatized and traumatized, and are left in both physiological and psychological pain by their years of medical treatment. Rodney Hunt is conducting a detailed qualitative study of parent-clinician communication to gain insight into the ways in which the current medical management of intersexed children is taken up or contested in a clinical setting. He aims to achieve a deeper understanding of the institutional and social factors that influence parent-clinician communication and decision-making when treatment options are discussed. Ultimately, Rodney’s goal is to advance current theoretical understandings of sex and gender in medicine and health policy frameworks, and to provide a valuable evidentiary base for diverse stakeholders, including clinicians, social scientists, health policy makers, intersex support groups, women’s health advocates, and those most directly affected, intersexed people and their families.
Research Pillar: Health Services
Estimating current and future direct medical costs associated with HIV/AIDS in British Columbia using an integrated model of clinical disease history and population transmission dynamics
HIV/AIDS continues to be a major health issue in Canada, twenty-five years after the first cases were reported. About 58,000 Canadians, including 13,000 BC residents, are infected with HIV (the human immunodeficiency virus that leads to AIDS), and the incidence appears to be rising. A rough estimate sets the medical costs of caring for people with HIV/AIDS at more than $800 million a year. But rapid treatment advances make medical costs a moving target. Karissa Johnston is using the computer simulation model she developed in her earlier MSFHR-funded research to more accurately estimate the annual and lifetime medical costs of treating people infected with HIV. Johnston has designed a series of modules to measure the amount of HIV virus in peoples’ bloodstream (called the viral load) over their lifetime, their initiation and adherence to antiretroviral medications, their use of health services, and their survival time with different treatment regimes. As new treatments or data become available, individual modules can be updated without affecting the others. This information can help health care providers assess the costs and effectiveness of different treatment options. For example, antiretroviral medications successfully suppress viral load, reducing the risk of passing the infection during a sexual encounter. Even though the medications are costly, this tool will show if they ultimately result in costs savings due to a reduction in new infections.
Knowledge translation of health outcome measurement research into clinical practice to improve health care effectiveness and efficiency in a Prevention and Early ACtive Return-to-work Safely (PEARS) …
With population growth, an aging population, and an aging and supply-limited workforce of health professionals, British Columbia is challenged to sustain its current levels of health services in the face of unprecedented demand. In this context, the use of valid health outcome measures (OMs) is important to evaluate and improve the results of various interventions for health professionals with musculoskeletal injury (MSI)-related disabilities. Prevention and Early Active Return-to-work Safely (PEARS) is a primary (injury prevention) and secondary (physiotherapy for MSIs) program designed to reduce disability in healthcare workers who have sustained a workplace injury. Outcome measures used in the program pilot included Activity-level self-report disability questionnaires. With expansion of PEARS across BC, only Participation-level outcomes like time-loss duration and level of return-to-work were retained. Currently, few physiotherapists in PEARS are using disability measures, limiting ability to measure effectiveness of the secondary prevention component of the program. This further limits ability to improve outcomes through predictive modeling and examining effectiveness of the variety of available treatments. Allan Kozlowski is evaluating a training program intended to promote the adoption of self-report outcome measures by PEARS program physiotherapists. In addition to information about how to use the OMs, individual- and organizational-level barriers will be identified and addressed. The objective is to demonstrate that physiotherapists can measure disability outcomes as part of their practice without diminishing patient service. Implications of this work include enhanced decision-making for individual patients, identifying ‘best-practice’ treatments, managing distribution of resources within health authorities, and development of enhanced predictive modeling of outcomes, all of which would contribute to a viable and sustainable health care system.
Characterizing British Columbia’s Rural and Northern Home Support Workforce: A Mixed Methods Investigation of Workers and Their Working Lives
BC’s home support system makes an important contribution to the health and well being of the province’s most vulnerable seniors. In 2004/05, home support services were provided to more than 30,000 British Columbians. Most home support users are single senior women over the age of 75, living below the poverty line. Home support consists of personal care services (e.g., bathing, dressing, feeding) as well as basic medical care (e.g., giving medication, keeping wounds clean) provided in people's homes by trained Community Health Workers. Zena Sharman is examining the characteristics and working lives of home support workers in rural and remote BC communities, within the Vancouver Island health authority. She is also investigating factors that contribute to the recruitment and retention of Community Health Workers in rural and remote BC communities. Sharman hopes her research will help improve health services delivery in these communities, particularly in the context of the aging population and related increases in demand for home support services. She also hopes her findings can improve methods of attracting and keeping Community Health Workers.
Predicting the outcomes of cancer care services
With an aging population, rising costs and an increasing number of cancer cases, predicting the outcome of cancer care services is important for health care planning. Predictions can be based on computer models that take information from simple processes into larger systems. A model’s accuracy can be determined by comparing its predictions with real-world data and activity. As an MSFHR scholar, Dr. Chris Bajdik created a model to predict demand for hereditary cancer services in BC. He is now working to further develop prediction models for cancer care services. These new models will predict outcomes associated with cancer screening, treatment, supportive and palliative care. The predictions described through modeling will be compared with observed outcomes from provincial, national and international cancer care services. Dr. Bajdik’s approach provides a cost-effective way to predict outcomes – using the experience reflected in previously-collected data. Most importantly, these models will provide healthcare planners with a tool to predict the outcomes associated with new cancer care services and health policies. If the predictions are considered accurate, health care agencies can better plan and evaluate their services to care for those with cancer. The methods can be generalized to develop models for other forms of health care and other diseases.
Health Innovation Design and Evaluation (HeIDE)
In the last decade, the Canadian government has invested billions of dollars in development of a Canadian health information infrastructure. Health information technology goals are varied but they usually include faster, more efficient delivery of care based on shared information through electronic health records. However, despite the investment to develop an information technology infrastructure, the potential gains for the health system have been slow to materialize. Dr. Ellen Balka’s research focuses on the challenges associated with realizing Canada’s vision of an information technology-rich health care sector. She is working with stakeholders in actual health care settings, including technology developers, health system decision makers and health care providers, to assess design shortcomings, usability, implementation challenges, and issues related to governance of information technology within organizations. Dr. Balka’s studies will contribute to a more comprehensive understanding of how complex it is to introduce new information-based technologies into the health sector, and will lead to development of strategies that improve the rate of success for these initiatives within the health system. This will ensure that the potential benefits of these systems and technologies (administrative efficiencies, improved patient care and development of health data for research purposes) can be achieved.
The pathways project: Evaluating the transition of psychiatric services from hospital to community
Deinstitutionalization is the process and implementation of the transition of mentally ill individuals to community-based care. Although the rationale for transition from hospital-based to community-based care can be understood in terms of the desire to improve the quality of life of those living with mental disorder, the reality of resettling large numbers of previously institutionalized patients in the community raises questions about the potential risks and benefits for patients, their family members, and the public. Riverview Hospital, once Canada's largest psychiatric hospital, currently cares for the most chronically ill patients in BC, all of whom will be transferred to Tertiary Regional Psychiatric Facilities in the coming years. This significant restructuring of health care delivery provides a rare, naturalistic research opportunity to document the practical, clinical, and social implications of transferring psychiatric services to community-based settings.
Prior to transfer from hospital, Dr. Tonia Nicholls’ team will conduct a detailed evaluation of each patient’s clinical (e.g. physical health, psychiatric symptoms), (b) behavioural (e.g. suicide, self-harm, aggression, activities of daily living), and (c) psychosocial (e.g. consumer satisfaction, quality of life, stigma) status. After moving into a community care setting, each patient will be re-assessed several times to determine what, if any, changes are found. The study will evaluate to what extent closing Riverview Hospital has intended and unintended consequences. Specifically, Dr. Nicholls will study rates of homelessness, criminalization, and the transinstitutionalization experiences and health system utilization (e.g. contacts with police, admissions to correctional and forensic facilities, emergency room visits) of this cohort of individuals with severe mental illness.
In addition to patient interviews, information from patients' family members and peers, as official record databases will also be used in this study. Through a comprehensive evaluation of the process and outcomes of transferring psychiatric care to community settings, her work will demonstrate the implications of deinstitutionalization at both an individual and community level and will serve to inform future practice and policy decisions.
Risk Assessment and Prediction of Infectious Disease Outbreaks (RAPID): An integrated framework of quantitative public health policy design
Traditionally, British Columbia has played an important role in public health policy design in Canada. BC has a reputation for providing leadership in population health research aimed at improving the health of its residents. To continue providing leadership in this realm, BC needs to create a timely, quantitative framework to stifle the increasing threat of emerging and re-emerging infectious diseases. Despite medical advances, communicable diseases remain a major cause of death, disability and social and economic upheaval for millions around the world. Consequently, combating infectious diseases requires planning beyond individual-based interventions. Dr. Babak Pourbohloul is working to develop an integrated research, mentoring, education, and knowledge translation platform. He will create a quantitative risk assessment and predictive framework to understand the pattern of infectious disease spread, and will develop mathematical models to identify optimal, cost-effective control strategies against a wide variety of infections. This research will enable public health leaders to address six key areas: the most effective control strategies for emerging respiratory infectious diseases and influenza pandemic preparedness; vaccination program evaluation; public safety and bioterrorism; public health issues associated with infection control in marginalized populations; hospital infection prevention; and outbreak containment. Through Dr. Pourbohloul’s research, both the province and the BC Centre for Disease Control can maintain their vision and leadership in managing the complexity of infectious disease transmission with innovative and sophisticated quantitative tools – improving the health of all Canadians.
Developing a Decision-Support Framework for Locating Regional Palliative Care Hubs in Rural and Remote Canada
Canada’s aging population is on the rise, resulting in greater demand for palliative care services (PCS). However, service delivery is unable to meet demand, particularly in rural and remote areas due to the absence of existing infrastructure, qualified medical practitioners, funding, and user volume. In addition, many of these services have been developed in urban centres, resulting in a centralization of palliative care services and facilities.
One solution to address the need to provide PCS to residents of rural and remote areas is to relocate care recipients to service-rich urban centres. However, research has documented that most Canadians prefer to spend their last days at home. The development of regional palliative care hubs is an innovative solution for delivering PCS to residents within these rural and remote communities.
Using a mixed-method study design that combines geographic information science (GIS) and spatial analysis with qualitative methods, Dr. Nadine Schuurman will determine which rural and remote BC communities are potential candidates for regional palliative care hubs, and what potential barriers exist for accessing these services — both by patients and by providers. Her research will also include the development of a GIS-based decision support tool for determining the most suitable communities for serving regional centers, and identifying the types of patients and providers most likely to benefit from having a hub in these locations.
Dr. Schuurman’s goal is to provide insight into how to provide palliative care to an aging population in rural and remote Canada and to help inform policy and program decision-making related to the allocation of health care resources.
Timely Access to End-of-life Care for Patients with Life-threatening Illness
The goal of this study is to ensure patients with cancer and other fatal illnesses receive the right kind of end-of-life care at the right time and in the right place. For this to be possible, it is essential to improve the ability of clinicians to accurately assess how long these patients will live because their expected length of survival is a key factor in determining the types of care they will receive. In a research project involving one palliative care program in BC and two in Alberta, this team is assessing the extent to which health data that is collected routinely during initial and follow-up assessments can improve the accuracy of survival estimates.
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