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Data Governance Cancer Care Ontario
Personal Case Study
TABLE OF CONTENTS
This section will not be the focus of this project document, but rather a short introduction so that the audience can relate to the background of CCO. As the Ontario government’s advisor on the cancer and renal systems, as well as on access to care for key health services, Cancer Care Ontario (CCO) drives continuous improvement in disease prevention and screening, the delivery of care and the patient experience for chronic diseases. Known for its innovation and evidence-based approaches, CCO leads multi-year system planning, contracts for services with hospitals and providers, develops and deploys information systems, establishes guidelines and standards, and tracks performance targets to ensure system-wide improvements in cancer, chronic kidney disease – through the Ontario Renal Network – and access to care.
CCO began life in April 1943 as the Ontario Cancer Treatment and Research Foundation. More than a half century later, in 1997, it was formally launched and funded as an Ontario government agency. CCO is governed by The Cancer Act and is accountable to the Ministry of Health and Long-Term Care (MOHLTC).
CCO directs and oversees approximately $1.5 billion in funding for hospitals and other cancer and chronic kidney disease care providers, enabling them to deliver high quality, timely services and improved access to care. CCO employs about 1,000 staff members, all of whom are critical elements that contribute to the success of this organization.
The reality is more of us are going to face living with or caring for someone with one or more chronic diseases. Cancer and other chronic illnesses like kidney disease are strongly associated with age
- We project that by 2015, the number of people diagnosed with cancer, for example, will have increased by 50% from 1999 figures. And that 45% of men and 40% of women in Canada will face cancer in their lifetime
- At the same time, health care spending in Canada continues to rise faster than inflation and population growth. 
- The Ontario government cautions that “Without a change in course, health spending would eat up 70% of the provincial budget within 12 years, crowding out our ability to pay for many other important priorities.” 
The pressure on our health systems will be unsustainable if we do not take action. Together, we have an opportunity to respond to the health needs of the people of Ontario through increased efforts in prevention, and by driving the delivery of more patient-centered, integrated and high-quality care for greater value from every health dollar we spend.
Cancer Care Ontario’s goal is to broaden the use data for our quality and performance improvement approaches to include other care settings, and to do so in ways that enable us to integrate care across all phases of the patient journey. We will make decisions and provide advice based on the best available evidence.
Cancer Care Ontario has launched an enterprise-wide initiative to assess and build capacity in the new Analytics and Informatics portfolio. In response to recent organizational structure, significant efforts are being dedicated to examine how data is used, both within the organization, and as provided to our external stakeholders. I personally think that this project, case study, will be of utmost importance to facilitate the definition and implementation of the enterprise data governance model and assessment of the new data requirements at CCO.
Data governance is one of the building blocks of data management and is often considered to be an integral part of data quality efforts, master data management programs data policies, business process management, and risk management surrounding the handling of data in an organization.
Data governance is a set of processes that ensures that important data assets are managed and acknowledged throughout the enterprise. Data governance is all about data that can be trusted and that people can be made accountable for any issues that arise because of low data quality. It is about putting people in charge of fixing and preventing data related issues so that quality of the data is not compromised thereby enabling the enterprise to become more efficient. Data governance forces enterprises to think outside the box by deviating them away from orthodox practices and processes of handling the data and using technology when necessary in many forms to help aid the process.
Initiatives to implement data governance, either technological or organizational efforts, usually come from the corporate office with a top-down emphasis. Even though this approach is well intended and carries valuable recommendations, it’s often met with internal resistance and suspicion. As a result, this approach falls short when it comes to implementing data governance to make a significant impact within the business.
This case study will be used to demonstrate how data governance can be implemented in a unique manner. My approach emphasizes a repeatable and sustainable methodology focused on supporting key business processes. I will review the methodology, components, and stages developed to implement data governance for specific data types through several proof of concepts. As a direct result of this effort I shall present lessons learned, challenges encountered, and business benefits realized to date.
You will often hear executives discuss issues that relate to data issues, data quality challenges, data inconsistencies, untrusted data, etc. At Cancer Care Ontario the data is collected from wide variety of sources and in various formats. It has been collectively determined that many sources, redundant and inconsistent information, for the data have caused significant rise in issues related to data quality, data access and data delivery to the end user (business user).
CCO has well sponsored data projects and data clean-up projects to address the challenges stated above. Data projects are performed to make the data clean and to improve the quality of data. In-spite of these efforts it doesn’t stay clean forever. There is no clear understanding of the root cause and no clear understanding of how to keep the data clean.
Data cleanup can happen by brute force and will often result in short term improvements, especially if coupled with improved business processes, but process improvement may not suffice. The proper implementation of Data Governance can make it work; make it sustainable. The executive team, including representatives from the new Analytics and Informatics portfolio, at Cancer Care Ontario believes that the data cleanup efforts (remediation) can lead to short term success which can result in improved Data Quality for a short period of time, but without data governance, it will not last.
Business leaders know what they want (they want clean data that can be trusted), but I believe they don’t have a concrete idea on how to get there. It will be a daunting task for Business, management, and IT to get to a common ground and agree upon implementing the fundamentals of Data Governance. It would be beneficial if the business managers can see something real; something that would help them understand the value of Data Governance. This realization one day can lead to the creation of Data Governance portfolio with in CCO where in the concepts, fundamentals, and framework can be developed internally through formal training.
 Canadian Institute for Health Information (CIHI) 2011. National Health Expenditure Trends, 1975 to 2011
 Ontario Ministry of Health and Long-Term Care 2012. Ontario’s Action Plan for Health Care Queens Printer of Ontario