Say NO to PHIPA Prescribed Registries like Cancer Care Ontario

  • by: Prof.Paula
  • target: Cancer Care Ontario, Brian Beamish, Kathleen Wynne, Daniel Therrien, Justin Trudeau

Did you know that under section 39 and 45 of the Personal Health Information Protection Act (PHIPA) certain organizations are designated as prescribed registries. Under PHIPA, prescribed registries have the permission to collection your personal, private, and confidential health information without your consent for the purposes of planning and management. The Privacy Commissioner of Ontario has designated Cancer Care Ontario (CCO) as a prescribed registry. Why?

You may have received a letter in the postal mail from Cancer Care Ontario (CCO) informing you that it is time to get a pap test. If you did not get a pap test, you probably got a second harassing letter in the postal mail. If you did get a pap test, you probably got a follow up letter in the postal mail informing you of your results. You may have successfully opted out of the program, in effect, withdrawn consent, consent that Cancer Care Ontario (CCO) never had. If you did, you may still have received a second harassing letter in the postal mail anyway.

This must change. How does sending a reminder letter in the mail impact planning? How does having your name and address impact planning? It does not! There are ways to collect anonymous data to get demographic information such as how many women over 40 have cervical cancer. Your name and address are not necessary to get the information needed to plan for medications, treatment facilities, and hiring of healthcare workers. Furthermore, it is a duplication of paperwork and time for a third party to get involved unnecessarily in your health. This money and labour could be better spent on nurses to care for the sick or research to find cures to disease.

What is Cancer Care Ontario (CCO) up to? There are better ways to raise awareness about cervical cancer prevention. There are better ways to obtain your consent. Print, radio, TV, and social media campaigns are much more effective at raising awareness about important health issues. Postal mail brings certain risks: mail can get lost or delivered to the wrong address. Imagine your neighbours accidentally opening your pap test results.

Where do the screening letters stop? Will we one day have mandatory screening letters for AIDS, sexually transmitted diseases (STDs), and abortions? Imagine your neighbours accidentally opening these kinds of follow up letters by mistake. Did you know that participating in a screening program, voluntary or not, can lead to private insurance companies denying you coverage? This becomes even more important in retirement when many people need to seek private health insurance to cover medical costs like physiotherapy and prescriptions.

Why is Cancer Care Ontario (CCO) targeting cervical, breast, and colon cancer? These cancers are not even in the top ten of cancer killers for Canadians (Statistics Canada, 2011).

What happened to doctor - patient privilege, privacy, and confidentiality? Throughout the United Nations, Canada, and Ontario, doctors follow a code of ethics to keep your personal, private, and confidential medical information private and confidential unless you consent otherwise (CMA, 2004; CPSO, 2015; CPSO 2005; WHO, 2011; WMA, 2006). Even PHIPA section 18, calls for express informed consent. As does, the Personal Information Protection and Electronic Documents Act (PIPEDA) sections 6 and 7. Likewise, the Freedom of Information and Protection of Privacy Act (FIPPA) section 21, 41, and 42 call for consent to disclose private records. Medical advice to have or not have a pap test should come from your family doctor. The decision to have a pap test should be in consultation with you doctor. The results of your pap test should be provided to you only from your doctor. When former Prime Minister, Pierre Trudeau, was Justice Minister, he was quoted for his signature line "There's no place for the state in the bedrooms of the nation" (Globe and Mail, 2016). Likewise, the state has no business with your vagina.

How is it that in Canada, one of the freest countries in the world, we can ignore our own as well as globally recognized rights to informed consent in the free world?

In Canada, we have the Tri-Council Policy Statement (TCPS) which calls for informed consent for the collection of data for research purposes (2010). The TCPS comprises of the Canadian Institutes of Health Research (CIHR), the Natural Sciences and Engineering Research Council (NSERC), and the Social Sciences and Humanities Research Council (SSHRC). In the free world, in particular the medical world, including the World Health Organization (WHO) (2011), the Public Health Commission of Canada (PHAC) (2012) and the Centre for Disease Control (CDC) (2016), health workers, researchers, and policymakers adhere to the the Nuremberg Code (1949), the Declaration of Helsinki (1964), and the Belmont Report (1979).

Cancer Care Ontario (CCO) and Personal Health Information Protection Act (PHIPA) can find a better way to raise awareness about cancer prevention such as a social media campaign (CDC, 2011; HQCA, 2010). They can find a better way to anonymously track data for the purposes of health care planning and management.

Although on the letters, it lists contact information for the privacy and access office, neither Cancer Care Ontario (CCO), nor the Privacy Commissioners of Ontario or Canada responded to my emails. This is a huge violation in terms of informed consent. As a participant in a study, I have the right to speak with the investigators and the approval board at any time. Even though I raised the concerns about lost or wrongly delivered mail and confidentiality as well as doctor - patient privilege, my responses were not acknowledged or validated. The letter campaigns were not re-evaluated nor stopped. I opted out of the program, but Cancer Care Ontario (CCO) continued to send harassing letters.

The Personal Health Information Protection Act (PHIPA) section 45(4) states that the Commissioner reviews registries every three years. Cancer Care Ontario (CCO) was designated a prescribed in 2005, renewed in 2008, 2011, and 2014. The prescribed registry designation of Cancer Care Ontario is up for renewal in 2017. Tell the Privacy Commissioner that you do not want Cancer Care Ontario (CCO) to have its prescribed registry designation renewed in 2017. Tell the Privacy Commissioner that you do not want letters mailed to your home without your consent. Tell the Privacy Commissioner that you do not want prescribed registries that gather your private and confidential personal information without your consent. Tell the Privacy Commissioner that there are better ways to plan and manage for health care without collecting personal, private, and confidential information or sending letters in the postal mail.

The Personal Health Information Protection Act (PHIPA) Privacy Commissioner must review and stop this prescribed registry practice immediately in favour of an informed consent practice to protect the privacy rights of Ontarians and Canadians.

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Belmont Report. (1979, April 18). Ethical principles and guidelines for the protection of human subjects of research. Retrieved from

Canadian Medical Association (CMA). (2004). Code of ethics. Retrieved from

Centre for Disease Control (CDC). (2011). The health communicator’s social media kit. Retrieved from

Centre for Disease Control (CDC). (2016). Public health ethics. Retrieved from

College of Physicians and Surgeons of Ontario (CPSO). (2005, November). Confidentiality of personal health information. Retrieved from

College of Physicians and Surgeons of Ontario (CPSO). (2015, May). Consent to treatment. Retrieved from

Declaration of Helsinki. (1964, June). Ethical principles for medical research involving human subjects. Retrieved from

Globe and Mail (editorial). (2016, February 29). "No place for the state: The day Ottawa got out of the nation’s bedrooms". The Globe and Mail. Retrieved from

Health Quality Council of Alberta (HQCA). (2010, December). Review of Alberta's responses on to the 2009 H1N1 influenza pandemic. Retrieved from

Nuremberg Code. (1949). Permissible medical experiments. Trials of war criminals before the Nuremberg military tribunals, 181-182. Retrieved from

Public Health Agency of Canada (PHAC). (2012). Public health ethics and ethical research. Retrieved from

Statistics Canada. (2011). The ten leading causes of death, 2011. Retrieved from

Tri-Council Policy Statement. (2010). Tri-Council Policy Statement: Ethical conduct for research involving humans. Retrieved from

World Health Organization (WHO). (2011). Standards and operational guidance for ethics review of health-related research with human participants. Retrieved from

World Medical Association (WMA). (2006). International code of medical ethics. Retrieved from

We want PHIPA to stop designating organizations as prescribed registries who can violate our informed consent. We want an Ontario and a Canada that respects research ethics and informed consent.

The Cancer Care Ontario (CCO) cancer screening letters violate ethics and informed consent recognized by the medical world for research with human participants. The CCO must have our written consent prior to their letter campaign not after. The CCO has no business with women’s personal private parts - with women’s vaginas.

There are better ways to raise awareness about cervical cancer prevention such as print, TV, radio, and social media campaigns.

The CCO and other registries can use anonymous demographic data to track and plan for health care. They do not need our personal name, address, and telephone number linked to our OHIP card number in order to plan and manage cancer health.

Demand, PHIPA 45(4), review of this practice for registries to collect our data without our consent. Demand that Commissioner, Brian Beamish, upon the 2017 review of CCO, revoke their special registry status. Demand that PHIPA abandon the prescribed registry designation.

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