Stand Up to Diabetes

Diabetes Testing Report : Frequently Asked Questions

What is a Diabetes Testing Report?

There are three key tests that people living with diabetes should receive on a regular basis. They are :

  • the HbA1C blood glucose test, which is recommended at least every six months;
  • the LDL-C cholesterol test, which patients should receive at least every year; and
  • a retinal eye exam, which patients should receive at least every two years.

The Diabetes Testing Report is a paper-based report aimed at informing primary care providers when their patients with diabetes last had an HbA1C test, LDL cholesterol test, and retinal eye exam. It will also inform primary care providers of the percentage of patients in their practice that have completed testing within recommended intervals. In addition, primary care providers will be able to see how their practice compares to their Local Health Integration Network and provincial averages.

The Diabetes Testing Reports are part of the Baseline Diabetes Dataset Initiative (BDDI) and supports the Ontario Diabetes Strategy by informing primary care providers about the timing of test dates for the HbA1C test, LDL-C test and retinal eye exams of their patients with diabetes, which can assist you and your provider to better manage your diabetes care.

What is the Ontario Diabetes Strategy?

The Government is committed to addressing the growing prevalence of diabetes through an integrated, comprehensive, province-wide strategy aimed at preventing diabetes and improving diabetes care in Ontario.

The Ontario Diabetes Strategy (ODS) was created to improve the health and health outcomes for Ontarians living with diabetes. The ODS will build the infrastructure for a comprehensive prevention and treatment system that will provide a foundation for addressing other chronic conditions in the future.

Why is the Ministry issuing a public notice?

The Ministry is issuing a public notice campaign to inform the public about the Diabetes Testing Report and to notify them that they may withhold or withdraw their consent to have their personal health information included on the Diabetes Testing Report.

In order to create the Diabetes Testing Report, primary care providers may share their patients’ names, health numbers, dates of birth, and will confirm which of their patients have diabetes, with the Ministry. This sharing of personal health information is permissible under the Personal Health Information Protection Act (PHIPA), but only under what is known as an implied consent model, which means that a patient’s consent can be implied until such a time as he or she withdraws it.

Upon receiving this validated information, the Ministry will use information in the Ministry’s own databases to produce primary care provider (PCP) specific Diabetes Testing Reports. These Reports will include the dates on which the PCPs’ patients last had 3 key diabetes tests (HbA1C test; LDL-C test; and retinal eye exams).

What is the Ministry’s legal authority to collect, use and disclose personal health information for the Baseline Diabetes Dataset Initiative?

In Ontario, the Personal Health Information Protection Act, 2004 (PHIPA) is the legislation that governs the collection, use, retention and disclosure of personal health information (PHI) by health information custodians, including the Ministry and primary care providers (PCP). Under section 29 of PHIPA health information custodians are permitted to collect, use or disclose PHI either with the consent of the individual, or, where PHIPA or another law permits or requires the collection, use or disclosure without consent. Where consent is required, implied or express consent are equally valid, except if PHIPA specifically requires express consent.

What is express and/or implied consent?

Express consent means that an individual is asked for, and expressly provides, his or her permission (either orally or in writing) to the health information custodian (i.e. the Ministry and primary care providers) to collect, use or disclose his or her Personal Health Information (PHI). Express consent is required where a custodian discloses PHI to another custodian for purposes other than the provision (or assisting in the provision) of health care, or where a custodian discloses PHI to a non-custodian.

Implied consent, by contrast, means that a custodian may infer from the actions of an individual that s/he consents to the collection, use or disclosure of his/her PHI.

Whether consent is express or implied, it must nevertheless meet the following four conditions. The consent must :

  • Be that of the individual;
  • Be knowledgeable;
  • Relate to the information being collected, used or disclosed; and
  • Not be obtained through deception or coercion.

For consent to be “knowledgeable”, PHIPA requires that it be “reasonable in the circumstances to believe” that the individual knows :

  1. The purpose for the collection, use or disclosure; and
  2. That s/he may give or withhold consent.

PHIPA provides that “it is reasonable to believe that an individual knows” the purposes for the custodian’s collection, use or disclosure of the individual’s PHI, if the custodian posts or makes readily available a notice describing the purposes “where it is likely to come to the individual’s attention”, or if it provides the individual with such notice.

Finally, PHIPA provides that if an individual has given express or implied consent to the collection, use or disclosure of their PHI by a custodian, the individual may withdraw his/her consent by notifying the custodian of this decision, but the consent withdrawal cannot have retroactive effect.

The initial transaction involving PHI associated with BDDI, for OHIP billing providers, is the creation of the Initial Patient Lists (in which the Ministry uses PHI in its own databases to generate a list for individual PCPs, which includes their patients with diabetes). As BDDI is a program provided, and funded by, the Ministry, the Ministry has the authority to use PHI to generate the Initial Patient Lists under s. 37(1)(c) of PHIPA, which provides that the Ministry may use personal health information for “planning or delivering programs or services that the custodian provides or that the custodian funds in whole or in part”.

The legal authority on which the Ministry and PCPs rely for the other collections, uses and disclosures of PHI that form part of BDDI, is the implied consent of the individuals whose PHI is being handled. For clarity, in the case of non-OHIP billing providers, the Ministry doesn’t have the information in its databases that is required to generate the initial patient list. As such, non-OHIP billing providers generate their own initial patient lists based on the implied consent of their patients. PHIPA permits custodians to collect, use and disclose PHI based on implied consent (rather than express consent) if the purpose of the disclosure is to assist in the provision of health care. As such, the Ministry and PCPs are authorized to collect, use and disclose PHI for the purpose of BDDI based on the implied consent of individuals because the purpose of the BDDI is to assist PCPs in the provision of health care to their patients with diabetes.

Implied consent for BDDI is based on a notice that meets the requirements set out in PHIPA. The notice, which describes transactions involving PHI that are necessary for the BDDI, has been made available to Ontarians through publication in English, French and ethnic papers, on the Ministry’s website, and in brochures and posters in pharmacies, laboratories and Diabetes Education Programs. The notice explains that Ontarians may withhold or withdraw their consent to the inclusion of their PHI in Diabetes Testing Reports, which are ultimately disclosed to their primary care provider. If individuals do not withhold or later withdraw their consent, the Ministry and the individual’s primary care provider will rely on the implied consent of those individuals to collect, use and disclose his or her PHI.

Why has the Government introduced the Diabetes Testing Report?

The Government has introduced the Diabetes Testing Reports to help primary care providers in providing the best possible diabetes care for patients.

Your primary care provider will have the date of your last HbA1C blood glucose control test, LDL-C cholesterol test, and retinal eye exam and can discuss with you whether the frequency of your tests fall within recommended guidelines.

The Diabetes Testing Report will make it easier for primary care providers to identify their patients with diabetes who are due for testing, to support diabetes care.

How is the Diabetes Testing Report created?

For primary care providers (PCP) who submit billing records to the Ministry’s Ontario Health Insurance Plan (OHIP), the Diabetes Testing Report is created using data submitted to OHIP. PCPs were provided with two different packages :

  • The Diabetes Patient List consisted of a list of individuals who are identified as patients with diabetes, who have been matched to the primary care provider through the application of an algorithm that considers diabetes-related administrative billing incidents to link the provider and the patient. Providers were asked to validate their Diabetes Patient List and return it to the ministry, confirming if each individual listed is their patient, and an adult with diabetes (excluding gestational diabetes and pre-diabetes). Providers may also add to, or remove individuals from, the list, as appropriate.
  • Providers who validated their Diabetes Patient List received the Diabetes Testing Report, which lists the patients that the provider validated, and the most recent dates when those patients had their three tests (HbA1C test, LDL-C test and retinal eye exam).

Future iterations of the Diabetes Testing Report will be expanded to include salaried providers (e.g. providers working in Community Health Centres, Group Health Centre, Rural Northern Physician Group Agreement, etc.) as well as Nurse Practitioners working in Nurse Practitioner-Led Clinics. Salaried providers will be asked to generate or provide the Diabetes Patient List based on the implied consent of his/her patients.

How/why does the Ministry have those three test results?

The Ministry does not have the test results. The Diabetes Testing Report only includes testing dates, which are compiled through analysis of Ontario Health Insurance Plan (OHIP) claims, in conjunction with patient enrolment and registration data held by the Ministry of Health and Long-Term Care. The Diabetes Testing Report is provided to your primary care provider to support them in delivering the best possible diabetes care and improve patient awareness of best practices for the three diabetes tests :

  • The HbA1C blood glucose control test, which patients should receive at least every six months;
  • The LDL-C cholesterol test, which patients should receive at least every year; and
  • A retinal eye exam, which patients should receive at least every two years.

Who is a primary care provider?

Primary care providers include all providers in Ontario who work in various health care models, as the first point of contact between the patient and the health care system, in addition to Nurse Practitioners who work in Nurse Practitioner-Led Clinics.

Why doesn’t my primary care provider already have that information about me?

Your primary care provider may have the most recent test dates, however the Ministry of Health and Long-Term Care estimates that most Ontarians living with diabetes do not have these tests within the recommended time periods, and so we have created the Diabetes Testing Report (DTR) for primary care providers in Ontario and their patients to work together to better manage diabetes care.

The Ministry created the DTR to inform your primary care provider when you last had these three important tests. The DTR serves as an important reminder to your primary care providers to speak to you about getting tested regularly. The fact is that people living with diabetes who are tested regularly are better able to manage their diabetes and avoid complications. If you have diabetes and are not sure if or when you have had these tests talk to your health care provider.

What are the benefits of participating in this program?

People with diabetes who are tested within the recommended intervals are better able to manage their diabetes and avoid complications. Participating in this program :

  • Helps your primary care provider better manage your diabetes care;
  • Lets your primary care provider know if you are overdue for an HbA1C test, LDL-C test, or retinal eye exam; and
  • Makes it easier for your primary care provider to talk to you about your diabetes care.

Patients will not receive the Diabetes Testing Report. The Report is a tool for primary care providers.

How can I participate?

You do not have to do anything. The information in the Diabetes Testing Reports is for your primary care provider to provide the best possible diabetes care.

Is my personal health information protected?

The Ministry has extensive policies and procedures in place to protect your personal health information. These policies and procedures are available at: http://www.health.gov.on.ca/english/public/legislation/bill_31/personal_info.html

In addition, if you would like more information about the collection, use and disclosure of your personal health information for the purposes of the Diabetes Testing Report, or if, at any time, you change your mind about having your information included in the Diabetes Testing Reports, you may call ServiceOntario at :

1-800-291-1405 or TTY: 1-800-387-5559

What if I do not want to participate?

If you have previously contacted ServiceOntario to withdraw your consent to participate in this initiative, your personal health information will not be included on the Diabetes Testing Report that will be sent to your physician, and the Ministry will not use or disclose your personal health information for purposes related to the Diabetes Testing Report initiative. This means that you will not be included in any future Diabetes Testing Reports.

If, at any time, you wish to withhold or withdraw your consent to have your personal health information included on a Diabetes Testing Report, or if you change your mind about having your information included on a Diabetes Testing Report, call ServiceOntario at 1-800-291-1405, TTY: 1-800-387-5559.

You may also wish to inform your primary care provider of your choice to withdraw your consent.

Should you choose to withhold or withdraw your consent, your primary care provider will continue to provide health care to you.

What information is shared with my physician or the Ministry to inform them that I withdraw/withhold my consent? Why do you need to share that information if I withdraw/withhold my consent?

Individuals can withhold or withdraw your consent to have your personal health information included on a Diabetes Testing Report, by calling ServiceOntario at 1-800-291-1405, TTY: 1-800-387-5559. A letter confirming your withdrawal of consent is mailed to you and the Ministry will request your consent to send a copy of this letter to your provider to inform him or her that you have withdrawn your consent to participate in BDDI. If you do not provide your consent to the Ministry disclosing the letter to your provider, you are encouraged to contact your provider directly to let him or her know of your decision to withhold or withdraw your consent.

Individuals who have withdrawn their consent will not be included on the Diabetes Testing Report, nor in the subsequent iterations of BDDI. By withdrawing consent, your primary care provider will not receive information on the dates of your most recent HbA1C test, LDL-C test, and retinal eye exams. Should you choose to withhold or withdraw your consent, your primary care provider will of course continue to provide the best possible health care to you.

What are the specific transactions in the Baseline Diabetes Dataset Initiative that involve a collection, use or disclosure of personal health information by the Ministry?

When a primary care provider, who bills OHIP, first participates in BDDI, there are five transactions that involve a collection, use or disclosure of personal health information by the Ministry as detailed below.

Note that primary care providers, who participated in the first wave of BDDI, will be receiving updated Diabetes Testing Reports, and as such, only transactions 4 and 5 will occur to produce an updated report.

1. Ministry creates initial Diabetes Patient List
The Ministry has developed a BDDI Diabetes Patient List generation algorithm, which extracts Personal Health Information (PHI) from Ministry databases and matches patients to a Primary Care Provider (PCP) with whom the patient has had a relationship that involves a diagnosis of diabetes or diabetes management.

The use of PHI to generate the initial Diabetes Patient List is permitted under s. 37(1)(c) of PHIPA. That provision permits custodians to use PHI “for planning or delivering programs or services that the custodian provides or that the custodian funds in whole or in part, allocating resources to any of them, evaluating or monitoring any of them or detecting, monitoring or preventing fraud or any un-authorized receipt of services or benefits related to any of them.”

In the second phase of BDDI, the ministry expanded the scope of BDDI to include salaried providers who do not bill OHIP (e.g. providers working in Community Health Centres, Group Health Centre, Rural Northern Physician Group Agreement, etc.) as well as Nurse Practitioners working in Nurse Practitioner-Led Clinics. For salaried providers, the Ministry will not be creating an initial Diabetes Patient List. Instead, salaried primary care providers will be asked to generate or provide their own Diabetes Patient Lists based on the implied consent of his/her patients, using a Patient Change Request form. The Ministry will then create the Diabetes Testing Reports, using the ministry’s own databases, this step is described more fully under number 4 below.

2. Ministry provides Diabetes Patient List to PCP
Next, the Ministry provides the initial Diabetes Patient List to all participating PCPs. Any patients on a PCP’s Diabetes Patient List must have been seen by the PCP at least once in the past and the PCP must have submitted a diagnosis of diabetes or a diabetes management related procedure to the Ministry as part of a billing claim.

In other words, the PHI contained in the initial Diabetes Patient List was originally provided to the Ministry by each PCP as part of the OHIP billing process, and as such, the Ministry is only providing each PCP with PHI that the PCP originally provided to the Ministry.

Since the PHI provided to each PCP only includes PHI that was originally provided to the Ministry by that PCP in billing records, this provision of PHI back to the PCP does not constitute a “disclosure” of PHI under PHIPA, based on s. 1(3) of the PHIPA regulation, which states that “In the definition of “disclose” in section 2 of the Act, the expression “to make the information available or to release it to another health information custodian or to another person” does not include a person’s providing personal health information to someone who provided it to or disclosed it to the person, whether or not the personal health information has been manipulated or altered, if it does not contain any additional identifying information”.

3. PCPs Validate accuracy of initial Diabetes Patient List
PCPs will validate the accuracy of the Diabetes Patient List by indicating that each patient on the List either: a) has diabetes and is the PCP’s patient; b) does not have diabetes; or c) is not the PCP’s patient. The PCP will also ensure the list is as accurate and up to date as possible by adding additional patients with diabetes from his/her practice to the Additional Diabetes Patient List.

The purpose for this step is to ensure that all of the PCP’s patients with diabetes are correctly included on the initial Diabetes Testing Report that the PCPs will use to provide direct patient care to these patients.

In disclosing this PHI to the Ministry, PCPs are relying on the implied consent of their patients -- based on the notice campaign. PCPs are not asked to validate their initial Diabetes Patient Lists until after the public notice has been distributed, in order to allow individuals to withhold or withdraw their consent to participate in BDDI. The notice campaign satisfies the requirements of implied consent under ss. 18(5) and (6) of PHIPA.

In addition to the public notice campaign, the Ministry encourages PCPs to discuss BDDI with their patients with diabetes, and to allow patients to expressly withhold or withdraw their consent to participate.

4. Ministry generates Diabetes Testing Reports
Based on the validated patient lists, the Ministry will use information in the Ministry’s own databases to produce PCP-specific Diabetes Testing Reports. These Reports will include the dates on which the PCPs’ patients last had 3 key diabetes tests (HbA1C test; LDL-C test; and retinal exams).

The authority for the Ministry to use PHI to create the Diabetes Testing Reports is section 18(2) of PHIPA, which permits the Ministry to use PHI based on implied consent. The notice campaign satisfies the requirements of implied consent under ss. 18(5) and (6) of PHIPA.

5. Ministry distributes Diabetes Testing Reports to PCPs
The final step is the Ministry’s distribution of the Diabetes Testing Reports to PCPs. The Ministry is authorized to disclose the Diabetes Testing Reports to PCPs based on the implied consent of the individuals whose PHI is contained in these Reports, under ss. 18(3)(b) of PHIPA. The notice campaign satisfies the requirements of implied consent under ss. 18(5) and (6) of PHIPA.

Upon receiving the Diabetes Testing Report, the PCP may use the information to provide health care to his/her patients with diabetes. Specifically, the report will identify where patients have not received the three key tests in compliance with best practices. The PCP can use this information to improve management of diabetes care.

The PCP’s authority to use the Reports is the patient’s implied consent, based on the public notice campaign. In addition, ss. 20(2) of PHIPA permits PCPs that receive PHI about an individual from another custodian (the Ministry), for the purpose of providing health care or assisting in the provision of health care to the individual, to assume that they have the individual’s implied consent to collect, use or disclose the information for the purposes of providing health care or assisting in providing health care to the individual, unless the custodian that receives the information is aware that the individual has expressly withheld or withdrawn the consent. In the context of the BDDI, if a patient has withdrawn their consent, their PHI would not be included in the Report sent to their PCP.

Who can I contact if I need more information?

Call ServiceOntario at :

1-800-291-1405
TTY: 1-800-387-5559

Or

Send an email to diabetes@ontario.ca

 

 

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