Healthcare Innovation Informed by Research

Submission to the Health Canada Advisory Panel on Healthcare Innovation Healthcare Innovation Informed by Research Brian Bobechko, Elizabeth Eisenhauer, Robin Harkness*, Thomas Hudson, Patrick Sullivan and Christine Williams On behalf of the Canadian Cancer Research Alliance (CCRA) December 5, 2014 * Address correspondence to Robin Harkness at robin.harkness@partnershipagainstcancer.ca or 416.619.5752 The Canadian Cancer Research Alliance is supported by the Canadian Partnership Against Cancer through a financial contribution from Health Canada. L Alliance canadienne pour la recherche sur le cancer est soutenue par le Partenariat canadien contre le cancer grâce à une contribution financiére de Santé Canada. 1 University Avenue, Suite 300 1, avenue University, bureau 300 Toronto, ON M5J 2P1 Toronto (Ontario) M5J 2P1 Tel: 416-915-9222 Tél. : 416-915-9222 Fax: 416-915-9224 Téléc. : 416-915-9224 www.ccra-acrc.ca

The Canadian Cancer Research Alliance (CCRA), a collaborative of 35 cancer research funding and related organizations, welcomes this opportunity to contribute to the Advisory Panel on Healthcare Innovation. Collectively, activities undertaken by CCRA members provide broad insights across the cancer continuum in Canada from research to prevention, patient care and policy. With this unique perspective, we share four innovation themes with the Advisory Panel that can significantly influence the future of the health system and health care delivery. 1) Innovation in big data analytics to support population health research and health services delivery. 2) Innovation supporting chronic disease prevention research to reduce the burden of chronic illness and resultant health care costs. 3) Innovation to support a clinical research intensive health system to improve health outcomes. 4) Innovation in palliative care to improve patient care delivery. Individually and collectively, supporting these innovations by building on existing expertise, will: Enhance the efficiency, quality and cost-effectiveness of the healthcare system; Position the Canadian healthcare system to appropriately embrace advances in technology; Move the healthcare system to be proactive in prevention and palliation. 1. Innovation in Big Data Analytics to Support Population Health Research Medicine is being transformed as a result of data-intensive technologies used to screen, detect, diagnose and monitor individuals before, during and after they are ill. Big data analytics has become a key driver of health care research in order to measure the cost and effectiveness of diverse treatment strategies. The convergence of informatics, genomics, global networking and social networks provides tremendous opportunities to improve the management of patients and the delivery of health services if clinically-useful information can be analyzed and reported to health care providers and patients in an easily interpretable form. Canada has a number of unique assets for health services and population research. These include a large and diverse population, a universal health care system, rich health care administrative data sources and an intellectual tradition that values health services and population research in policy decision-making. An example is the Institute for Evaluative and Clinical Sciences (ICES): Ontario s health information privacy legislation allows ICES, within a setting of rigorous privacy and data security policies and procedures, to link together a rich collection of unique databases (using encrypted health card numbers). ICES legislative mandate allows it to collect and analyze de-identified health information for the purposes of health system management, quality improvement and health services research. Opportunities/Actions Create a network of engaged cancer health services researchers in partnership with federal and provincial health agencies; Expand and network population-based repositories of survey, clinical, and administrative datasets to take full advantage of these unique assets and position Canada as a world leader. For example, (1) federation of provincial health administrative datasets that would allow pan-canadian studies across prevention and screening programs, and resource utilization by hospitals, providers, and (2) registries and cohorts such as the Canadian Partnership for Tomorrow Project (CPTP), which links five cohorts comprising over 300,000 Canadians; Develop the necessary methodological capabilities to perform this work with Canadian data, particularly around case costing and economic evaluations, and support research in knowledge translation to ensure Canadian Cancer Research Alliance Brief to the Advisory Panel on Healthcare Innovation 1

that important findings will be considered in treatment and policy decisions and that their value is demonstrated in real-world applications; Plan evaluative analyses using health administrative datasets coupled with intervention studies to develop and test better approaches to increasing participation in screening programs, new models of care, such as family physician or nurse-navigator follow up of patients, payment reform to move towards activity-based funding, and efforts to make palliative care available earlier in the disease course. If set up appropriately, the time for the return of data to health care agencies could be relatively short, leading to real-time improvements in programs with resultant benefits to patients; Leverage provincial, national and international initiatives, including the Global Alliance for Genomics and Health (GA4GH) and a variety of knowledge bases and user interfaces developed to support personalized medicine; Train personnel needed to support big data analytics, including computer scientists that specialize in machine learning, statisticians and biostatisticians, and software engineers and software developers versed in the emerging field of cloud computing; Upgrade and maintain cutting edge provincial and national compute infrastructure (i.e. Compute Canada): it will be essential to incorporate robust privacy and security mechanisms to store and analyze personal health information. Investments in big data analytics will enable Canada to take centre-stage in a new era of digitized and personalized medicine. This represents an opportunity to develop new technologies to store and share data, create software products and discover biomarkers that are needed for the application of personalized medicine concepts in the clinical management of patients in Canada and beyond. 2. Innovations in Chronic Disease Prevention Research on preventing chronic disease and the adoption of research findings remains a critical gap in reducing the growth in health spending and enhancing the quality of life of Canadians. While prevention research regularly tops the list of priorities among patient stakeholders, investment in research continues to lag compared to research on mechanisms of disease, treatment and even health services research. Fostering a culture and capacity to embrace the significant investment needed in prevention intervention research is critical to filling this gap, and this is an area where Canada has made and continues to make important innovations. In addition, there is a gap between prevention research and implementation of the findings by the health system. The strategic framework for cancer prevention research in Canada 1 highlights needs for enhanced investment in capacity, translation of research results, knowledge synthesis, and knowledge translation, evaluation, and emphasizing multi-disciplinary research with a focus on common risk factors for chronic diseases and health economics. The strategy builds on a foundation of investments by CCRA members, led by the Canadian Partnership Against Cancer and the Canadian Cancer Society, with key initiatives that promise impact beyond cancer. Examples include: The Propel Centre for Population Health Impact focused on improving the health of people and places across Canada with evidence-informed solutions to reduce preventable cancers, other chronic diseases and their behavioral and environmental causes. Canadian Partnership for Tomorrow Project (CPTP) a large, high-quality population laboratory that will help researchers unlock the secrets of what causes cancer and other chronic diseases (previously mentioned in Big Data Innovation). Canadian Cancer Research Alliance Brief to the Advisory Panel on Healthcare Innovation 2

Coalitions Linking Action and Science for Prevention (CLASP) aims to deepen the individual and collective impact of cancer centres, and cardiac prevention and rehabilitation centres in British Columbia, Ontario, Quebec and Nova Scotia in preventing cancer and other chronic diseases by tackling priorities such as tobacco use, nutrition and exercise. 2 Primary and secondary prevention strategies have already had huge impacts on health and cost reductions in health care. Examples include elimination of disease with vaccination, cancer and chronic disease risk reduction by smoking cessation, and early detection of cancers through screening, and as such represent proven innovations with huge impact potential. About fifty percent of cancers are preventable. 3 Tobacco use is a well-known cause of cancer and its continued use is attributable to half of all preventable cancers. If smoking rates could be reduced from the current 20% in Canada the impact on cancer incidence (and other chronic diseases) would be dramatic. How can this be achieved? There is a need to be more innovative implementing available knowledge to affect change. As another example, effective screening strategies exist for three of the approximately 200 cancers. What can be done to improve the uptake and accuracy of screening and what can be done to significantly increase the number of cancers that can be detected early through effective screening strategies? Opportunities/Actions The CCRA Cancer Prevention Research in Canada: a Strategic Framework of Collaborative Action 1 identifies a number of opportunities for innovation in prevention intervention research. There is an opportunity for the federal government continue to provide leadership in this area, and to partner with provincial counterparts, charitable and health care institutions, academic and industry partners to foster investment and a culture favorable to chronic disease prevention intervention research that brings together a community of actors. Considering the extent to which chronic disease risk factors cross disease types (e.g., obesity), there are significant opportunities for concerted multi-disciplinary, multi-disease, collaborative, and patient centered research leadership in disease prevention by the federal government. As demonstrated by the earlier examples, the return on investment is immense in reduced morbidity and mortality, and health system productivity and societal cost savings, along with improved quality of life/health lives for Canadians. 3. Innovative Investment in Clinical Research Infrastructure to Support a Clinical Research Intensive Health System and Improve Overall Health Outcomes Mounting international evidence in cancer and other fields indicates that health care delivery offered in clinical research intensive institutions/systems results in improved health outcomes for all patients with, in some cases, meaningful cost savings. Thus the innovation of funding the infrastructure needed to enhance multicenter academic clinical trials (e.g., personnel support for research nurses, ethics and regulatory support) is one that must be widely adopted in Canada. Modeled on the extraordinary success of a clinical trials network in the UK, the CCRA has recently begun a multi-partnered initiative (the Canadian Cancer Clinical Trials Network www.3ctn.ca) to fund such infrastructure (at about $250,000 CAN per 1 million population) but it is time limited and confined to cancer trials. Stable ongoing support of academic clinical trials, particularly randomized trials will enable enhanced contributions from Canadian clinicians in the investigation of new models of care delivery and new therapeutic approaches to benefit future patients, and reduce health system costs. Canadian Cancer Research Alliance Brief to the Advisory Panel on Healthcare Innovation 3

Clinical research, specifically clinical trial research, has benefits that include identification of new treatment paradigms and investigation of comparative effectiveness of existing standards to shape best practice. International evidence suggests that all patients treated in clinical research intensive institutions enjoy better health outcomes than matched patients treated at non-research intensive institutions. 4 Key data include: population based outcomes of ovarian cancer from Germany, in which patients treated in research-active hospitals had significantly improved survival compared to those treated in non-research-active institutions 5, evidence from the USA in coronary artery disease, where researchers showed reduced mortality in hospitals active in trial participation (an effect across all patients, not just those on trials) 6, breast cancer outcomes in Quebec have been shown to be better for patients referred to centers with on-site radiotherapy, research activity, or teaching status 7, and finally in the UK where national infrastructure for clinical trials ( 250,000 per million population) has been implemented as an innovation by the Department of Health in England, substantial increases in clinical trial accrual has been seen and an independent association between increased participation in interventional clinical studies and improved 5 year survival of colorectal cancer has been documented. 8 Contrary to what might be expected, patients on clinical trials do not increase health care costs. Six publications evaluating health care costs of over 1,600 clinical trial patients from US and Canada versus matched controls show non-significant differences in costs of care. 9,10,11,12,13,14 Furthermore, when drug costs are evaluated specifically, studies from Alberta, USA, and Germany, show savings up to $23,751 per patient (Alberta) or more ($2million/year in a US institution). These savings result from free drug supply as an alternative to standard of care provided as part of trials. 15,16,17.18 Opportunity/Actions The data suggest that the innovation of providing a modest amount of core infrastructure support to key institutions to recruit and retain staff in clinical trials units to enable the growth of a clinical research intensive Canadian health system will reap rewards in terms of improved outcomes for today s patients. This can provide cost savings in terms of drugs, and will permit the investigation of new models of care delivery and new therapeutic approaches to benefit future patients. 4. Innovating Palliative Care Palliative care is a critical component of the healthcare spectrum, used to help patients and families dealing with a life-threatening illness. Although precise definitions differ, palliative care consistently refers to care meant to address a broad spectrum of symptoms, including physical and psychological, social and spiritual issues. Research shows that palliative care increases patients quality of life, satisfaction with care and end-of-life outcomes. 19,20,21 The need for palliative care crosses many disease states, but the overwhelming majority of patients being treated with palliative care have cancer. 22,23 Cancer remains the leading cause of death in Canada, and the number of cancer cases is projected to increase as the Canadian population grows and ages. Research increasingly shows that palliative care provided early in a disease trajectory as early as the point of diagnosis can provide improved communication, symptom control, treatment knowledge, stress relief and in some cases, longer survival. 24,25 Early intervention with palliative care, integrated with curative care, should be Canada s best practice goal. There currently are few formal processes or pathways that ensure early referrals of patients to palliative care. Synthesis of several studies concludes that palliative care has been shown to be either cost-neutral or less costly than other standard care. 26,27 Many patients are using resource and cost intensive acute and emergency room services at least once in the month leading up to death. This could be reduced by integrating palliative care Canadian Cancer Research Alliance Brief to the Advisory Panel on Healthcare Innovation 4

options early in the treatment path. In oncology, palliative care given concurrent with usual care is now endorsed by the American Society for Clinical Oncology (ASCO) because it results in better quality of life, better quality of care, improved symptom management, and equal or better survival, at an affordable cost. 28 Opportunities/Actions The federal government is well positioned to provide national leadership in collaboration with partners in the healthcare, charitable, public and private sectors to develop a national strategy for the delivery of a cost-efficient integrated and team-based approach to palliative care in Canada to advance comprehensive, consistent, best practices in palliative care in Canada. Implementing consistent surveillance on metrics such as referrals to and use of palliative care, as well as costs of palliative care across the country, to significantly improve our ability to assess and address gaps in care. Tangible national guidelines for healthcare decision-makers to use to ensure a minimum level of care or a consensus on pathways to ensure early referrals to palliative care would be a first step. This will require a cultural shift in how healthcare providers, patients and families view palliative care. Physicians must be willing to refer their patients to palliative care services early in their treatment regime, and patients and families need to be provided with the education, support and resources they need to meaningfully engage in advance care planning. Concluding Statements Each of the four themes (big data, prevention, clinical trials and palliative care) offer innovative opportunities to build on existing expertise and assets to promote and address public, healthcare provider and government concerns about the healthcare system. The innovations are ready for deployment with limited investment, and these will improve the coordinated functioning, effectiveness and efficiency of a valued national healthcare system. Innovations derived from developing Canada s expertise and assets will Enable Canada to benefit from the new era of digitized and personalized medicine and provide the evidence needed to validate improvements introduced in the health system; Enable the conduct and implementation of prevention research for societal health benefits, long term cost savings to the health care system and impact on the economy; Develop a clinical research intensive health system to further knowledge translation to improve health care delivery, reduce system costs and ultimately patient outcomes; Inform the healthcare system on the development of national guidelines for palliative care and its integration as a best practice goal to enhance patient care and quality of life. While each of the themes speaks to a distinct aspect of the health system there is a shared need for data that will support informed decision making. As identified in Section 1, big data analytics, making use of, and expanding on, current data gathering capabilities will support opportunities to test and apply innovative solutions related to the causes, prevention and treatment of chronic diseases. Seizing and supporting the opportunities will enhance innovation and Canada s stature as a world leader in each of the areas identified. Canadian Cancer Research Alliance Brief to the Advisory Panel on Healthcare Innovation 5

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