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Research / Access Research/ FAQ

Frequently Asked Questions

Here is a list of Frequently Asked Questions asked by patients and their families:

 

  1. What is research and what are the benefits of participating in research?

Research is a way to learn more about particular diseases or conditions, which can lead to the discovery and evaluation of new treatments. Research benefits patients and the community by continually improving the care that the hospital provides and bringing new, effective treatments to those who need them.

 

  1. What is Access Research?

Access Research is a program that has been created between St. Joseph's Healthcare Hamilton and the Research Institute of St. Joe’s. It helps provide our patients with opportunities to participate in research studies that have been approved by a research ethics board.

 

  1. Does Access Research impact my clinical care at St. Joseph's Healthcare Hamilton?

No. Regardless of your participation in the Access Research program, you will continue to receive the same high-quality clinical care that St. Joseph's Healthcare Hamilton provides to all of its patients.

 

  1. Do patients sign-up for Access Research, or are patients automatically included?

Patients are automatically included in the Access Research program once they register as a patient within the hospital. Patients will be made aware of this at the registration desk. Participation in the Access Research program is not mandatory; patients can withdraw at any time.

 

  1. How do I withdraw from Access Research?

Patients can withdraw from Access Research by notifying the clerk upon registration, or by notifying the researcher when contacted by telephone. Patients can also withdraw any time from Access Research by visiting our Withdrawal page.

 

  1. What happens when I withdraw from Access Research?

When you withdraw from Access Research, your choice is noted in your patient record and you will not be contacted about potential research studies in which you may be eligible to participate. If you have withdrawn from the Access Research program and wish to sign-up again, please contact Adam Weerdenburg (aweerden@stjoes.ca). If your contact information was provided to a researcher before you withdrew, you may still receive a call about that project.

 

  1. Who is included in the Access Research program?

Only patients who have registered at the hospital after April 1, 2020 will be automatically included in the Access Research program. If you have been a previous patient at St. Joseph's Healthcare Hamilton and would like to join the program, please contact Adam Weerdenburg (aweerden@stjoes.ca).

 

  1. How do we ensure your privacy?

The Access Research program is compliant with the Personal Health Information Protection Act (PHIPA). You patient record is securely stored on the hospital’s network, where only authorized individuals are granted access.

 

  1. How does the Access Research program work?

The Access Research program works by comparing the eligibility criteria for a research study with your patient record. No individual will see your record. The study eligibility criteria are entered into a secure program, which will scan your chart to see if you are eligible. If you match, you may be contacted by members of the research team to see if you would like more information or are willing to participate. Being matched to a study does not mean that you are automatically part of that study.  

 

  1. What information does the program access?

The program only accesses information in your patient chart at St. Joseph's Healthcare Hamilton. It does not access information from any other health care provider outside of the institution.

 

  1. Who can access my information?

Your information is not accessed by an individual, it is only matched to study criteria by a computer program. Your health information will never be accessed by any individual without your consent. 

 

  1. What information will research teams see?

When you are matched to a research study, members of a research team will only see your name, telephone number, and the number associated with your patient record. No other information is provided.

 

  1. How often can I expect to hear from a research team?

How often you are contacted depends on the eligibility criteria for studies at the Research Institute of St. Joe’s. You may be contacted up to a couple times per year, or not at all. If you have been matched to a study, the researchers for that particular study are the only people who can contact you within a 30-day window. After that 30-day window, you will be eligible to be matched to a new study.

 

  1. Is Access Research a research study?

No. Access Research is not a research study; it is only a method to inform you of opportunities to participate in research.

 

  1. Do I have to participate in research?

No. Participation in research is your choice.

 

  1. Where can I find more information or provide comments about Access Research?

You can find more information about the program on the Access Research page, or you can call the hospital at 905-522-1155 and speak to the Research Administration Office (extension 36115) or the Chief Privacy Officer (extension 35088).