Patients

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repository.diabetesaction.ca/d2sl
647-355-1939
data2savelives@utoronto.ca
500 University Avenue 5th Floor, Toronto, ON M5G 1V7 
A PATIENTS VOICE IN RESEARCH IS MOST VALUABLE

What does it mean to be engage and contribute as a patient partner?

We aim to integrate the patient perspective into every step of the research process including developing research questions, defining research objectives, collecting data and evaluating results; however, while some patients have the readiness to contribute as full members of research teams, others may bring a range of expertise such as in ethics or as knowledge brokers.  Overall the patients’ roles will vary according to the contributions a patient is prepared to offer. 

 

Is your family physician part of the network?  Just ask! 

Click here to download a printable physician package that you can hand deliver to your family physician.

Currently on virtual visits?  Click here to download a version that you can email directly to your family physician.

As always, trusted use of personal health information is paramount. All projects conducted in the secure analytic virtual environment require approval from the DAC Research Governing Committee.  This committee is made up of 50% patients.  They have a direct say in the use of the data to ensure that it is used in the best interest of the patients. 

Patient Partners as Research Team Members

As the field of patient-oriented research grows, research teams are looking for Patient Partners to collaborate throughout the research process in such areas as priority setting, study design, analysis and knowledge translation.  The roles of Patient Partners in this capacity differs based on the needs of research teams and will be defined prior to engagement.   Some examples include, Research Program co-lead, Research Study advisor, Governance committee member, Workshop Planning .   Patients may also be involved directly with research teams by bringing expertise from their lived experience with a illness to research projects. Patients can provide expertise in many ways, including their experience of living with diabetes and, if applicable, complications; experience with the health care system (care delivery) and experience with specific treatments (drugs, surgeries, devices).  Advising on research projects includes discussing research projects at Patient Circle meetings to provide guidance to researchers and help make the research focus more relevant to patients.

 

DAC and UTOPIAN are committed to ensuring the ethical handling of research data contained in the National Diabetes Repository and UTOPIAN Data Save Haven for the purpose of public health research. Organizational, physical and technological safeguards are implemented locally, regionally and nationally to ensure the privacy of research subjects is protected and that all collection, retention, use or disclosure of research data complies with applicable privacy legislation and the Tri-council Policy Statement, Ethical Conduct of Research Involving Humans,2018.

 

 

 

UTOPIAN – University of Toronto Practice-Based Network

DAC – Diabetes Action Canada

repository.diabetesaction.ca/d2sl | data2savelives@utoronto.ca | 647-355-1939 | 500 University Avenue 5th Floor, Toronto ON M5G 1V7

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


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