Many layers go into self-advocating as a Black women in healthcare spaces. Women we’ve talked to have reported:
“Researching and trying to figure out ahead of time to prepare myself for the questions that the doctor is going to ask me.”
Being “I’m on my Ps and Qs. I have to know my questions, I have to do a bit of research before going there, have an understanding of what it is.”
“Not communicating with them that way where they just see me as an angry Black woman” … "so being mindful of the language that I use.”
“You have to kind of change your tone, change your language.”
Articles about Self-Advocacy
Race Isn’t a Risk Factor in Maternal Health. Racism Is.
by Dr. Joia Crear-Perry (2018)
Dr. Joia Crear-Perry asserts that its racism, not race, that is a risk factor in Black women’s maternal health care. She talks about the existence of racism as an indisputable fact. Though Dr. Crear-Perry doesn’t go into specifics about how to advocate, she lays out the importance of understanding the racism, discrimination and bias you experience is not about you!
The Dilemma of the Black Patient
by Yolanda Y. Wilson, PhD (2019)
Dr. Wilson considers the difficulty Black patients have in healthcare and the consequences of self-advocacy by answering the question “So what is a Black patient to do?”
How Black Women Can Advocate for Our Health
by Raechele Cochran Gathers, MD (2019)
Dr. Cochran Gathers offers Black women 6 ways to advocate for themselves during encounters in healthcare in a brief article.
Videos about Self-Advocacy
How Do You Self Advocate for Your Health? | Ask the Doctor
In Healthy Kyla’s ‘Ask the Doctor Series,’ she speaks with Dr. Hawkins about how to advocate for your personal health. Both women have endometriosis and discuss diagnosis. Dr. Hawkins also highlights the importance of research, expressing what you’re feeling, being persistent and seeking a second opinion.
The Black Maternal Health Crisis: How to Advocate for Yourself and Your Loved Ones
“It’s really scary right now for a pregnant Black woman. That’s not including COVID-19.”
Eva Wilson highlights Black women’s experiences of not being heard in while talking to AnnMarie Collymore about her near-death experience after childbirth because of postpartum-preeclampsia.
Self-Advocacy While Black
Dr. Joy DeGruy hosts a group of professionals to discuss self-advocacy in the midst of COVID-19 from a professional and personal perspective. Interestingly, the group understands being Black as a pre-existing condition in healthcare.
The group highlights how to ask questions about doctor decisions, speaking to the person in charge
Documents to Support Self-Advocacy
Know Your Rights: Disclosure as a Patient
Summary: There is currently no legislation or case law obliging patients to tell their doctors, nurses, dentists, surgeons, paramedics or any other health professionals that they are HIV-positive. Whether you disclose your HIV status to healthcare professionals is up to you. Healthcare providers are only supposed to ask you information relevant to your care and treatment.
Know Your Rights: Privacy & Health Records
Summary: Healthcare professionals have a legal and ethical obligation to maintain confidentiality and take measures to protect your health information. Your health information can only be disclosed with your consent; there are only a few circumstances where the law requires them to share your health information without your consent.
While HIV and AIDS are reportable illnesses in all Canadian provinces (when an individual tests positive for HIV, the result is reported to the provincial public health authorities), you can take an anonymous test where your personal information is protected.
Personal Health Info
Ontario’s health privacy legislation, the Personal Health Information Protection Act (PHIPA), providers rules regarding your personal health information (PHI) such as providing individuals with the right of access to personal health information about themselves and providing individuals with the right to require the correction or amendment of personal health information about themselves.
PHIPA gives you the right to:
be informed of the reasons for the collection, use and disclosure of your personal health information;
be notified of the theft or loss or of the unauthorized use or disclosure of your personal health information;
refuse or give consent to the collection, use or disclosure of your personal health information, except in certain circumstances;
withdraw your consent by providing notice;
expressly instruct that your personal health information not be used or disclosed for health care purposes without your consent;
access a copy of your personal health information, except in limited circumstances;
request corrections to be made to your health records;
complain to our office if you are refused access to your personal health information;
complain to our office if you are refused a correction request;
complain to our office about a privacy breach or potential breach; and
begin a proceeding in court for damages for actual harm suffered after an order has been issued or a person has been convicted of an offence under PHIPA.
This information was taken directly from the Information and Privacy Commissioner of Ontario.
Health Privacy Rights
While HIV and AIDS are nationally notifiable diseases (public health legislation requires HIV positive test results to be reported to public health authorities), your personal health information, including your HIV status, is private, personal information.
There is currently no legislation requiring patients to tell their doctors, nurses, dentists, surgeons, paramedics or any other health professionals that they are HIV-positive.
However, telling your doctors about your HIV-positive status can be necessary to get good care, especially in the case of opportunistic infections. The decision is still yours to make and cannot be used against you. Healthcare professionals cannot refuse to treat you because of your HIV-positive status and should only ask questions that are relevant to providing care.
Consent
Health Care Consent Act (HCCA) provides rules regarding consent to treatment that apply consistently in all settings. The HCCA enhances the independence patients have in consenting to proposed treatments, requires that the wishes of capable patients are respected and explains that no treatment proposed by a healthcare practitioner should be performed unless given consent by the patient.
Elements of Consent (as stated in the HCCA)
The following are the elements required for consent to treatment:
the consent must relate to the treatment;
the consent must be informed;
the consent must be given voluntarily;
the consent must not be obtained through misrepresentation or fraud.
Requirements to give/refuse consent
A person described in subsection (1) may give or refuse consent only if he or she,
is capable with respect to the treatment;
is at least 16 years old, unless he or she is the incapable person’s parent;
is not prohibited by court order or separation agreement from having access to the incapable person or giving or refusing consent on his or her behalf;
is available; and
is willing to assume the responsibility of giving or refusing consent.
Informed consent
A consent to treatment is informed if, before giving it,
the person received the information that a reasonable person in the same circumstances would require in order to make a decision about the treatment; and
the person received responses to his or her requests for additional information about those matters.