They believe a child is in need of protection.
When we think of our relationships with health care providers, especially in the context of taking care of our sexual and reproductive health, we often want and expect privacy. We also often rightfully expect the information we share to remain confidential. Being able to trust our care team with information about our bodies and our lives is key to being able to discuss important health issues with them. The quality of care we receive depends on having or building that trust.
It can be pretty difficult to tell people personal things. Knowing you can trust the people who care for your health is important. Part of that trust is knowing what they can keep confidential and what information they might have to share with someone else.
You might like to get the ground rules clear by asking any questions you have about confidentiality before you speak with a health professional, a counsellor, a youth worker, etc. This way you have the power to decide what you want to share with them.
The following section provides an overview of important information on privacy and confidentiality in the context of a health care relationship.
Privacy and confidentiality: same thing?
We often use these two terms interchangeably, but they mean different things. Health care providers have legal and professional obligations to maintain both patient privacy and confidentiality.
Privacy means that we should be free from intrusion into our personal matters and our personal information or from being observed or disturbed by other people. For example, we can expect privacy during a medical examination, when we walk into an appointment at a fertility clinic or book an appointment at an abortion clinic, etc.
Sometimes, there might be some med students who are working with your health care provider. They might be present for physical exams. They are doing some important learning but if you are not comfortable with having them in the room, you are allowed to ask them to leave. You should be given the opportunity to refuse and/or be able to withdraw your consent.
Confidentiality refers to the handling of personal information or documents shared with your health care team that generally cannot be shared without your consent. When they can share it, confidentiality means that it is sent only to the authorized person/people. For example, test results, your health history, your HIV status, a pregnancy, a diagnosis, etc.
Sharing information: Giving consent
Consent is the main way we can exercise our right to have control over our health information. According to the law: we must give consent for the collecting, use or sharing of our information, unless an exception applies.
How do we give consent?
We can give “express consent” verbally, in writing, or as a directive. Consent can also be implied. That is when it is reasonable to assume someone has our consent. Our health care providers usually rely on our implied consent. This means that they can typically assume that when we go to the doctor or the clinic to get care, we consent to share information about why we are there, what has been going on with us, about our health history, etc.
Implied consent can certainly be taken too far, for example if we are being tested for HIV or other conditions without our knowledge (as in some places, it is done as a part of a routine blood test). We can always ask questions about what tests are being done, what blood samples will be used for or what information is being shared to make sure our implied consent is not being relied on for things we’d rather be consulted on.
What is a circle of care?
A circle of care is when there are a number of health care providers involved in caring for us. Information-sharing between the people in our circle of care also usually relies on our implied consent. For example, if you are pregnant and see your family doctor to get tested for a urinary tract infection, she may assume that she can send the test results to your midwife or OB-GYN (obstetrician) as that information is needed for them to care for you. Or if you are seeing an HIV specialist who refers you to a dermatologist or cardiologist, the dermatologist or cardiologist may assume that they can share health information about you with your HIV specialist. Any sharing outside of your circle of care needs to be approved by you AND you can always put some limits and conditions about what is being shared within your circle of care.
When and how do health care providers share information?
The doctor-patient relationship establishes an implied contract of confidentiality. This means that we should generally expect to be able to comfortably share sensitive information when we access health care and only have it shared when we consent to it.
However, there are situations when doctors and other health care providers are allowed or may be obligated to disclose some information you have shared with them, like when they have concerns about your safety or the safety of someone else.
Situations when health care providers are allowed or obligated to disclose some information*
*may vary by province or territory
Someone has a medical condition that may make it dangerous to drive.
They believe a resident of a nursing home or retirement home has suffered harm or is at risk of harm.
They are present for live births, still-births and deaths.
Someone is diagnosed with some specific communicable diseases and infections. Some diseases and infections are reportable to the health authorities as it is important to track trends and possible outbreaks. Click here for more information on reportable sexually transmitted infections
They are involved in a Community Treatment Plan. Health care providers involved in the care of patients who are following community treatment plans (or orders) have specific reporting duties under the Mental Health Act, which include providing the police with information pertinent to the community treatment plan.
They suspect health care fraud. For example, when an ineligible person receives or attempts to receive an insured service as if they were an insured person.
Sometimes, while they might not be obligated to, sharing personal information is permitted by law or based in professionalism and ethics. Health care providers are expected to use their professional judgment when deciding if they should share this information or not. Scroll down the page for a discussion on factors that can impact disclosure or judgment calls.
This can come up if they believe that someone is at major risk of causing serious bodily harm to a person or group of persons. Before they share any information, they need to consider: if there is a clear risk to an identifiable person or a group of persons; if there is a risk of serious bodily harm or death; and if the danger is imminent. This includes when they believe you may be at risk killing or seriously harming yourself.
When situations like this come up, we should be able to expect and ask whether our health care providers are familiar with applicable reporting obligations and that they inform us of what is happening, seek consent when they can, and make sure they limit the information disclosed to what they are mandated to report on.
Things to keep in mind
What are other moments to consider when we think of how the information we share might be handled?
Family and friends
A family member or friend might ask your health care team how you are doing or for an update on your health. You are allowed to restrict the information that can be shared, if any. Because of that, your health care provider is required to obtain express consent from you before they are able to share any kind of personal health information with the people asking about you. When you are not in a position to explicitly give that consent, they have to ask your substitute decision-maker.* When a situation comes up where it is not possible to get your consent, your health care team has to be very cautious and use their best judgment when they share information. Discussions with friends and family have to be limited to your general state of health.
*A substitute decision-maker is someone who makes decisions on your behalf if you become incapable of making them yourself. You can choose to appoint anyone who is willing and able to act on your behalf except: someone who is paid to provide you with personal care (unless this person is your spouse, partner or relative), someone who is mentally incapable, or someone who is under 16 years of age. It is likely you will want to choose someone close to you, whom you trust and who knows you well. It is important that you discuss your intent to name the person ahead of time to make sure they are willing to act for you if it becomes necessary. For more information visit http://www.seniors.gov.on.ca/en/advancedcare/choosing.php
“Leave a message after the beep”
Your health care provider may sometimes wish to communicate with you by phone. They should confirm with you that it is ok for them to contact you this way. Sometimes, they may have to leave a message on your phone or with a third party (for example, someone else you access services from). They should be cautious about the information they share when they leave a voicemail (i.e. test results, appointments, referrals, personal information, etc.) as sometimes, more than one person in a home or at our office may be able to access the messages. If you have any concern about leaving a message, make sure your health care provider and/or their staff knows this.
In the waiting room
As part of their job, our doctors, nurses and other health care providers may discuss personal matters with us, and, in turn, our personal matters with other providers and with office or hospital staff. For this reason, health care providers and all staff are expected to take every precaution to make sure that conversations that include patient information are not overheard by others. We can expect and demand that our health care providers show extra sensitivity when our health status or health care is being discussed, either on the telephone or in person, where others could hear. For example, if a doctor discusses our case with other staff at the reception area in a hospital, if a receptionist is making an appointment for us, etc. We should also expect that identifying and/or sensitive information will not be displayed for others to see on files that are being carried around or on a computer screen.
What are the reportable STBBIs?
A reportable disease is one that has to be reported to the public health authorities when it is diagnosed. These stats are an important tool for public health officials to detect trends and track outbreaks. Reporting requirements are mandated by provincial legislation and the list of reportable diseases differs by province/territory. For STBBIs, the list usually includes:
HIV and AIDS
Hepatitis A, B and C
Should I be worried? Will everyone know?!
“I tested positive for a sexually transmitted infection (STI)! Does this mean my name will be kept on a government list?” The quick answer is no. If today you test positive for chlamydia, your identity and confidentiality are safe. What will happen is that the public health unit in your area will be notified that there was a new case diagnosed. It is not attached to a name. The local health department adds up all new diagnoses of chlamydia and sends them to the Public Health Agency of Canada, which will combine stats to report the number of new chlamydia cases across the country. These agencies compile important data that is used to understand patterns in public health matters.
In the case of a nominal HIV test (during prenatal screenings, if you get tested by your family doc, or any other times when you get tested under your own name, the information will be reported to public health including identifying info. It is treated as confidential information.
Typically, if you get diagnosed with a reportable STI, the public health unit will try to track down the people you have had sex with so they can be notified of having been potentially exposed and help them access testing and treatment too. This is called partner notification.
This process is confidential. For example, if a public health worker calls your ex to let them know that they may have been exposed to chlamydia, your name will not be used. If you’d prefer to notify your partner(s) yourself, they can also help you figure out how to start this conversation.
What is anonymous testing?
Youth under 19: Consent, confidentiality and sharing information
*Information adapted from Legal Rights for Youth
If you are under 19 years old, you can consent to your own medical care as long as you are “capable”.
The law considers you capable if you show that you understand the following:
The need for medical treatment
What the treatment involves
The benefits and risks of treatment (or not being treated)
If your health care provider explains these things, feels like you understand them, and that the health care is in your best interest, they can treat you without permission from your parents or guardian. You might have to sign a consent form.
You can normally get medical treatment without the knowledge or consent of a parent or guardian for things like:
Mental health problems
Sexually transmitted infections
Alcohol and drug addiction problems
An exception might be if you refuse treatment and the consequences are potentially deadly for you.
Sharing information about your health and health care
When it comes to sharing personal health information, you have the right to make your own decisions about what information is collected, used or shared. If you are under 16 and you have given your own consent to medical treatment (i.e. you have opted to have an abortion or you have been tested and then treated for chlamydia, etc.) any decisions about what information can be shared is yours to make.
Will my parents find out?
Your health care provider can’t talk about your medical care with your parent(s) or guardian(s) unless you agree. But there are exceptions, see below. If you are considered capable of making your own medical decisions, then you have a right to doctor-patient confidentiality. That means the information is private between you and the doctor. Your health care provider should not give out any information about you to anyone, including your parent(s) or guardian(s).
If your doctor or health care provider does want to tell someone about your medical condition, they should ask you to sign a consent form that states exactly what information you are agreeing to share and who they are allowed to share it with.
It’s a good idea to check with your health care provider first to make sure that they will respect your confidentiality rights.
Exceptions to confidentiality
In some cases, parents may be able to get information about your medical care. If there is good reason to believe that you might harm yourself or others, or if there is reportable abuse (physical, sexual or emotional), then the information may not stay private. In such cases, you should be told why your information won’t be kept private and who it will be shared with. Some doctors will insist on telling a parent or guardian if they treat someone under 19. If you want your doctor to keep your medical information confidential, it’s important to tell this to the doctor from the start.
What can make sharing information more risky?
The duty to patient confidentiality that health care providers have is fundamental to our relationship with them. It means we can feel free to speak openly about our health concerns and our history, which leads to improved treatment outcomes.
Some things can have a big impact on the ability to build that trust with our health care providers and/or on how easily or safely we can access care when we need it. This section talks about what to consider for those of us who navigate stigma and discrimination – which can surface in health care settings, just like everywhere else. Stigma and discrimination can sometimes lead to complicated situations that can put some of us at risk of being mistreated or even criminalized when accessing health care.
Some people or communities are at higher risk of being mistreated, being reported, or criminalized. Stereotypes and stigma can impact how a health care provider reads a situation. Where race, class, sexual orientation, gender, gender identity and poverty intersect is where we see higher rates of stigma, criminalization and marginalization.
Both people who access care and service providers should keep this in mind as it may inform what you decide to share and how, and for service providers, it can help make sure you are cautious about context when assessing a situation carefully.
Health care providers don’t have to provide confidential information to police if there are no legal obligations to do so (i.e. a reporting obligation, a search warrant or summons). The general rules regarding consent and disclosure apply, which means that your health care provider needs to get your consent directly (or the consent of your substitute decision maker) before the police can be given personal health information.
If you are involved in sex work
Myths, stigma and assumptions around sex work can lead to being treated differently by your health care providers. It can mean that your care team is completely overlooking the rest of your life, only focusing on your job. This can have a negative impact on the ability of sex workers to access health care including sex positive health care services. Sometimes, stereotypes about sex work and sex workers lead health care providers to assume risky behaviors, which can lead to ‘judgement calls’ to involve police or Children’s Aid Society or other service providers based only on your involvement in the sex industry. It is important to be aware of that risk when making decisions about the information shared and to take time to build trust before deciding to disclose your line of work.
If you use drugs
Stigma and judgment around drug use can lead to being treated differently by your health care providers. It can mean that your care team is completely focused on your drug use, which can get in the way of proper care and choices they make about treatment. Sometimes, stereotypes about people who use drugs or fear-based information about drugs and drug use can lead health care providers to assume risky behaviors, which can lead to ‘judgement calls’ to involve security services, police or Children’s Aid Society. It is important to be aware of that risk when making decisions about the information shared and to take time to build trust before deciding to disclose drug use.
There are very good reasons to share our drug use with our health care providers (for example, the ability to diagnose properly or to inform possible interactions with other medications, etc.). But there are also good reasons to be cautious about when and how you share that information.
If you are living with HIV
Misinformation, stigma and assumptions can lead to being treated differently by your health care providers if you are HIV positive.
People living with HIV (PHAs) in Canada continue to be criminally prosecuted and convicted for not disclosing their HIV positive status to sexual partners. Despite the fact that the criminalization of HIV is bad public health policy, until the law is changed, it is a reality that people must live with and respond to.
If you are living in Canada without legal immigration status
Everyone should be able to access health care without fear. Some of us have legitimate concerns about the risk of being deported if we share our immigration status with a health care provider. While some cities (like Toronto and Vancouver) are implementing sanctuary city policies or working towards being sanctuary cities, other regions have seen health care providers refer patients to the Canadian Border Services Agency. Provinces that do not have a policy on immigration referrals may leave those decisions to the service provider. If you are uninsured, it is recommended to seek out a trusted support person/organization who can help you navigate the health care system, find the safer points of services, inform you of your rights. In some cities, community health centres, where doctors, nurse practitioners, registered nurses, social workers, and health promoters provide health services do not ask for an insurance number (or Medicare card). Community health centers charge low fees but you must live in the area in which the services are provided to be able to access their services. The information on their application forms will be kept strictly confidential. If you have a medical emergency, please remember you can always get help at any hospital emergency room regardless of your immigration status. However, you will be charged a fee for services and you may want to have your supports look into their record in terms of referring patients to border agencies.
If in Toronto: If you or someone you know are having trouble accessing any City of Toronto services, call the Solidarity City Network hotline at: 1-888-670-4486.
This service may be helpful in finding contact information for similar networks in other cities.
You can also get informed at: http://sanctuaryhealth.blogspot.ca/
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