Learning Objectives
| Gain insight into the rules about health data collection |
| Understand what is meant by consent |
| Understand the risks of not collecting and sharing health data |
There are laws that guide how health information can be collected, used, shared, stored, and disposed of. Some of these laws are federal, such as the Privacy Act and the Personal Information Protection and Electronic Documents Act (PIPEDA), and laws specific to health information in the provinces and territories.
The purpose of these laws, legislation, and policies is to protect the privacy and confidentiality of health information while supporting safe and efficient health care delivery, by regulating the collection, use, access, and sharing of health information.
Some of the key principles of these laws for managing health data include:
Confidentiality: Health information should be kept private and only shared with those who need to know.
Consent: Individuals have the right to know what their information is used for and how it will be shared.
Security: There must be measures to protect health information from unauthorized access.
Accuracy: Health information must be correct and up to date.
Accessibility: People have the right to see their own health information.
Regardless of where health data is collected, stewardship is very important. This means making sure that health data is kept safe, private, and used responsibly. Health care providers, such as doctors, nurses, clinics, and hospitals, are responsible for managing this data carefully so that it helps people receive the best care while protecting their personal details. Good stewardship also involves securely sharing the right data with the right people, like other health care providers, to ensure people get the help they need, or with other organizations to improve health for everyone.
When collecting or sharing health data, it’s important to follow the rules about consent, as required by law.
What is Data Stewardship?
Data stewardship is the data accountability function to ensure the authorized, appropriate, ethical, and responsible use of health data in accordance with a data governance framework. Data stewardship is the operationalization of data governance.
Ontario Health Data Council. (2022). A vision for Ontario’s health data ecosystem. Government of Ontario. https://www.ontario.ca/page/ontario-health-data-council-report-vision-ontarios-health-data-ecosystemOntario
What is Consent?
Consent is a key part of collecting and sharing health data. It means that you agree to what is being asked. It ensures that you have control over your personal health data and information and that it’s only used for legitimate purposes with your permission.
| Explicit Consent | This is when the individual clearly agrees, either in writing or verbally. Health care providers discuss this information with individuals, allowing them to ask questions and express any concerns to ensure they fully understand. If the individual agrees, they sign a consent form that shows their understanding and permission for their health information to be shared. This signed form is kept in the individual’s medical record as proof of consent. Individuals also have the right to change their minds and withdraw their consent at any time before their data and information is used, ensuring their choices are respected. |
| Implied Consent | This is based on common understanding. For example, when the individual goes to a health care provider for a checkup, it is usually understood that they agree to the health care provider collecting and using health data for care. When an individual goes from one health care provider, like a family doctor, to another, like a specialist, it is often assumed that the individual agrees to share their health data for continued care. Health care organizations may also use health data to improve the quality of care, like checking treatment results or making services better. |
| Deemed Consent | This means that permission to share health data is assumed by law, even if an individual didn’t say yes directly. In health care, this means that health data can be shared without specific agreement for important reasons, like public health. For example, if there is an outbreak of a disease, health authorities may need to know about it to protect the community. In these cases, only the minimum amount of data is shared. Deemed consent helps ensure that important health data is shared quickly to keep everyone safe. |
What are Risks of Not Collecting Health Data
While you do have the right to refuse to share your data, not collecting health data can lead to several problems for individuals and the health care system. Here are some main issues:
| Delayed Treatment | If health care providers can’t access a person’s data, it may take longer to find out what’s wrong and provide treatment. People might need extra tests or wait longer for care, which can make their health worse. At the provincial/territorial level, delays in treatment and diagnosis strain health care resources, creating backlogs in clinics and hospitals, especially in underserved areas. |
| Higher Costs | Not sharing data can lead to unnecessary tests and procedures, raising costs for individuals and the health care system. Resources may be wasted on repeated visits or tests that could have been avoided with better data. On the broader scale, inefficiencies in data sharing can lead to an increase in health care spending at the national level, diverting resources away from preventive care or improvement in other areas. |
| Poor Coordination Among Providers | Without shared data, communication between different health care providers can break down. This can create gaps in care, where important symptoms and treatment details are missed. For the community, poor coordination among health care providers can lead to health disparities, especially in rural or remote communities where access to specialized care is limited. |
| Weak Public Health Responses | If health data isn’t shared, it can hinder public health efforts, like tracking disease outbreaks. Without timely data, governments and health agencies may struggle to respond effectively to health emergencies, putting many at risk. At the national level, this can delay responses to public health crises, such as pandemics or natural disasters, leaving populations in situations of vulnerability unprotected. Timely collection and sharing are essential for effective emergency management and mitigation. |
| Limited Research Opportunities | Many health research projects rely on data from various sources. If health data isn’t shared, it can limit research that could lead to new treatments and better health policies. On a national scale, this lack of comprehensive data can slow down progress in medical research, hindering innovation that could improve health of people living in Canada. Communities might also struggle to address specific local health issues without complete data. |
| Increased Health Inequities | Not sharing data can worsen health inequities in communities because it doesn’t show a clear picture of the population’s health. Public health programs may not be as effective without accurate information on health needs of specific populations. This can perpetuate and worsen inequities in care. |
| Increased Frustration | People may feel frustrated when they have to repeat their medical history to different health care providers or when their care doesn’t seem coordinated. This can lead to a lack of trust in the health care system. On a larger scale this frustration can lead to disengagement and affect public trust. |
The course was developed in collaboration with the Public Health Agency of Canada.