Patient Education Program:
Strategic Framework 2019-2023
A cancer diagnosis is overwhelming. It affects and disrupts many parts of a person’s life. People with cancer, their families and caregivers have to handle a lot of new information, people and experiences, all while dealing with the stress and fears of a life-threatening illness. We[*] know that patients who are better informed have better health outcomes. We want to make sure Ontarians affected by cancer can access, understand, communicate and use information to actively participate in their own care. The Patient Education Program Strategic Framework outlines the goals and objectives of the Patient Education Program from 2019 to 2023, and will guide our work in this area over the next 4 years.
“Patient education is critical to cancer care. As more people are long-term survivors and with increasing treatment complexity, the cancer system is presented with significant capacity challenges with rising demand for cancer services. The active engagement of patients and families in their care enables higher quality care and contributes to system efficiencies. Patient education must be integrated into cancer care through skilled healthcare providers in patient and family education. With concerted efforts to improve the quality of patient education in Ontario, we are confident that we can realize high-quality, sustainable cancer care.”
Janet Papadakos
PhD, Provincial Head, Patient Education Program
Cancer Care Ontario
Goals & Objectives
Our[*] 3 goals are separate and unique, but also interconnected. For example, health literacy best practices support both patient education, and self-management and self-management support.
Knowledge translation and exchange, and research and quality improvement activities span the work of all 3 goals and their objectives. Therefore, we have not repeated them throughout the framework.
Goal 1
Set the Standard for Quality Cancer Patient Education
Patient education: A distinct and definable activity that supports the learning and behaviour of patients. It includes all learning experiences that patients engage in with the conscious intent of improving their understanding of and becoming active participants in managing their care. These learning experiences can be formal or informal, and initiated by the patient or the healthcare provider.[1]
“High quality patient education takes into consideration who the patient is and what their understanding and priorities are. Healthcare providers need to recognize that people all learn differently. Patients need a variety of resources to meet their learning needs.”
Effective patient education enhances patients’ knowledge and understanding of their disease and its treatment. It also improves treatment compliance and symptom management, the ability to cope, and overall satisfaction with care.[1] Best practices for quality patient education are well established[2] :
- Uses plain language and clear design principles
- Meets the learning needs of patients and caregivers
- Can be easily accessed when needed
We[*] use evidence-based best practice to create patient education material for cancer patients and families. This includes collaborating with patient and family advisors. Since 2015, the Patient Education Program has created and distributed patient education materials to complement clinical guidelines or fill provincial information gaps. As our program evolves, we will continue to develop and evaluate patient education resources.
Objectives:
- Develop a systematic process to identify and evaluate the quality of patient education resources in Ontario and establish plans to address gaps
- Apply evidence-based best practices to develop patient education resources that include patient, family and caregiver engagement in the identification of learning needs
- Promote the access and utilization of patient education resources
- Conduct ongoing review and continuously improve patient education resources
- Promote uptake of evidence-based patient education best practices among patient educators and build healthcare provider patient teaching competencies
For More Information
Goal 2
Advance Health Literacy in Cancer Care
Health Literacy: Entails people’s knowledge, motivation and competencies to access, understand, appraise, and apply health information in order to make judgments and decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the life course.[3]
“When patients and caregivers are informed and educated, we will have patient-centered care that is authentic, credible and effective. When healthcare providers are able to engage with patients and caregivers, addressing all their questions and concerns they build a mutually respectful relationship. Education empowers patients to take an active role in their treatment, improving patient outcomes.”
Health literacy is a stronger predictor of health status than socioeconomic status, age or ethnic background. People with low health literacy are more likely to:[4]
- have poor health outcomes[5]
- have medication errors[5]
- report negative experiences with the healthcare system[5]
How well patients and families understand health information depends on:
- their own skills and abilities
- the skills and abilities of their healthcare providers to communicate effectively
- the demands and complexities of healthcare systems and services
Since cancer care is extremely complex, a health literate approach to care is necessary.[6] Low health literacy also results in higher healthcare costs. In 2009, low health literacy in Canada cost an estimated 3% to 5% of the total healthcare budget for that year – approximately $8 billion. These costs are a result of avoidable emergency room visits and hospital readmissions, and patients accessing health services at late stages of disease.[7]
We[*] need to advance health literacy in cancer care to improve patient education and health outcomes in Ontario.
Objectives:
- Understand the effect of health literacy on cancer care and how it impacts health and health systems
- Develop an understanding of the current state of health literacy to identify opportunities for improvement
- Build health literacy competencies among healthcare providers, patients, families and caregivers
- Engage healthcare organizations to build health literacy capacity
- Engage provincial agencies and ministries to support and advance cancer health literacy
Goal 3
Promote Self-Management and Self-Management Support as a Cancer System Responsibility
Self-management: Cancer self-management is what a person does, in collaboration with their healthcare team to manage the symptoms, medical regimens, treatment side-effects, physical changes, psychosocial consequences, and lifestyle changes following a cancer diagnosis and/or treatment. It includes self-management activities and behaviours aimed to prevent or reduce health risks and optimize health and quality of life.[8]
Self-management support: Self-management support involves a collaborative relationship between patients and healthcare providers to identify the need for education and supportive interventions. The identification of patient needs includes: regular assessment of progress and problems, problem-solving support, goal setting and action planning.[8]
“Self-management affects the hard outcomes. With strong self-management support, we can hope to see more adherence to treatment, fewer emergency visits and less severe symptom burden. Overall, providing self-management support leads to better cancer care.”
“Cancer care is safer when patients are activated and informed and part of the healthcare team. Patients are doing much of the work, and therefore they need education on what the work is, why they are doing it, and the value to them. This helps patients make the right decisions at the right times.”
Self-management and self-management support improves access to, and the quality, safety and value of healthcare services.[8] Self-management behaviours may also empower patients so they can make informed decisions, cope with treatments and side-effects, and navigate their care effectively.[9]
As more demands are placed on patients to actively participate in their own care, effective self-management and self-management support become essential. Patients need to be able to safely do the tasks required to manage the medical aspects of their illness and treatment.[8] For example, some patients need to manage oral chemotherapy drugs they take at home. Patients also need self-management skills, including the ability to identify problems, so they can help manage the physical and psychosocial symptoms of their disease.[9]
The Patient Education Program has developed quality standards that outline strategies to implement self-management and self-management support in cancer care. They also outline the level of support patients and caregivers should expect to receive with regard to self-management during their cancer care. We[*] will continue to look for opportunities to promote self-management and self-management support, and encourage the development of self-management interventions at the system level.
Objectives:
- Develop standards and guiding principles for cancer self-management in Ontario
- Assess and evaluate interventions that promote cancer self-management support
- Build self-management competencies among healthcare providers, patients, families and caregivers
- Engage healthcare organizations to build capacity in the provision of self-management support
For more information:
Long-term Outcomes
““The successful execution of the Patient Education Strategic Framework will ensure that patients, families and caregivers have the information they need to make informed decisions about their care and are equipped to manage their health, in partnership with their healthcare team, to ensure the best possible outcomes for patients.”
The Patient Education Strategic Framework outlines the goals and objectives of the program over the next 4 years. Successful execution of the objectives and subsequent initiatives will promote the following outcomes:
- Patients, families and caregivers are engaged, knowledgeable, and equipped to participate in and contribute to their cancer care.
- Healthcare providers value patient, family and caregiver participation in care, are skilled educators, and know how to build effective partnerships for self-management.
- Healthcare organizations value patient, family and caregiver participation in their care, and make it easier for patients, family and caregivers to navigate, understand and use information and services to take care of their health.
Next Steps
To successfully achieve the goals and objectives set forward in this plan, we[*] will continue to work collaboratively with regional stakeholders. Each objective in the strategic framework will be supported by projects and initiatives to achieve the goals. These will include research and quality improvement initiatives as well as knowledge translation and exchange activities. Each project and initiative will have a measurement component, ensuring we can track progress on meeting the goals outlined in the strategic framework.
About This Framework
The Patient Education Strategic Framework outlines the goals and objectives of the Patient Education Program, and guides our work from 2019 to 2023. Aligned with the fifth Ontario Cancer Plan, the framework contributes to these cancer plan goals:
- Person- Centred: Deliver responsive and respectful person-centred care, optimizing quality of life across the cancer care continuum
- Equitable: Improve health equity across the cancer system such that people are not disadvantaged by who they are, where they live, or what resources they have
- Timely: Deliver timely care across the cancer care continuum
The Patient Education Strategic Framework supports the vision of the Patient Education Program: To support Ontarians affected by cancer to access, understand, communicate, and use information to make informed decisions, take actions about their health and effectively navigate the continuum of cancer care, in partnership with their healthcare team.
Why We Need a Patient Education Strategic Framework
A cancer diagnosis is overwhelming. It affects and disrupts many parts of a person’s life. Cancer care forces patients, families and caregivers[10] to:
- learn to navigate the healthcare system
- cope with intensive medical treatments
- manage their own symptoms and side effects
- build care relationships with multiple healthcare providers
This must be done while patients and family are dealing with the stress and fears of a life-threatening illness.
Adults learn best when they control what, how and when they learn. But when they are facing a cancer diagnosis, they lose that control. That can make them feel even more disoriented.
Since better-informed patients experience better outcomes, we must use approaches that make it as easy as possible for people to learn in a cancer care setting. These approaches are outlined in the Patient Education Strategic Framework.
How the Patient Education Strategic Framework was developed
The creation of this strategic framework was a collaborative process. We[*] formed a provincial review committee with members including:
- educators
- regional directors
- patient and family advisors
Each member had shown commitment to patient education and person-centred care, and enthusiasm for quality improvement in cancer care at the system level. Together, they developed the goals and objectives in the Patient Education Strategic Framework.
The creation of this framework was guided by:
- current knowledge of patient education best practices globally
- the diverse experiences committee members have had with patient education
For more information:
Acknowledgements
Patient Education Strategic Framework Review Committee Members
Cathy Bennett BScN, MEd
Manager, Oncology Patient Education, Juravinski Cancer Centre,
Cancer Care Ontario Regional Person Centred Care Lead
Christine Peters RD, MSc Quality Improvement and Patient Safety
Regional Oncology Lead, Person-Centred Care, Waterloo Wellington Regional Cancer Program
Debbie Devitt RN, BScN, CON(C), CHPCN(C)
Patient Experience Lead, Durham Regional Cancer Centre/Lakeridge Health, Patient Education Lead,
Central East Regional Cancer Program
Janelle Desjardins RN, MScN
Manager, Informatics & Psychosocial Oncology Program, Cancer Program, The Ottawa Hospital
John Podgorski OCT
Patient and Family Advisor, Cancer Care Ontario
Kathleen Smith MSc
Patient and Family Advisor, Cancer Care Ontario
Kirsten Burgomaster PhD
Director, Central East Regional Cancer Program
Laurel Warr BSc, BEd
Patient and Family Advisor, Cancer Care Ontario
Melody Boyd RN, BScN, MSc, MN
Operations Director, Simcoe Muskoka Regional Cancer Program and RVH Mental Health & Addictions Program
Tina Papadakos MA(Ed)
Co-Director, Cancer Self-Management Research Centre, Senior Manager, Educational Design & Knowledge Translation,
Cancer Education, Princess Margaret Cancer Centre. Patient Education Regional Lead, Toronto Central South
Traci Franklin MSW RSW
Clinical Manager, Patient Education and Psychosocial Lead. Supportive Care Program/Symptom Management Palliative Care Program.
North East Cancer Centre, Health Science North/Horizon Sante-Nord
Project Team
Janet Papadakos MEd, PhD
Provincial Head, Patient Education, Cancer Care Ontario. Co-Director, Cancer Health Literacy Research Centre; Associate Director ELLICSR Health, Wellness and Cancer Survivorship Centre, Princess Margaret Cancer Centre; Assistant Professor at University of Toronto, Institute of Health Policy, Management, and Evaluation
Lesley Moody MBA, PhD (c)
Director, Person-Centred Care, Cancer Care Ontario
Colleen Fox MSc
Group Manager, Psychosocial Oncology and Patient Education, Cancer Care Ontario
Sarah McBain MIS
Senior Specialist, Patient Education, Cancer Care Ontario
Priyanka Jain MPH
Team Lead, Psychosocial Oncology and Patient Education, Cancer Care Ontario