Patient/Family Registry


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EMPATHY Trial - Chronic Kidney Disease 1
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Steering Committee - Integrative Oncology Research and Education Program 1

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Mission Statement

Welcome, Alberta, to your Patient/Family Registry!

Our mission within the Patient Engagement Platform is to promote (spread the word!), support (let us help you!), and evaluate (are we doing this right?) patient engagement in health research in Alberta. We are creating the space for meaningful and active patient engagement in health research.

Please fill out our application form (under "I would like to volunteer").

Signing-up with us does not obligate you to participate in research.

 

 

"Alone we can do so little; together we can do so much."  Helen Keller

 

A note and disclaimer about the process of the Patient Engagement Platform team connecting you with researchers/research teams:

The Patient Engagement Platform team works as connectors or liaisons between patients/ the public/community and researchers/research project teams. We are always here to answer your questions; however, please note that once you connect with a team directly, we are not able to monitor or assess how things are working out for you. We cannot assume responsibility for how research projects unfold, or how you are engaged, or how teams interact with you. If you do find that you have concerns, or your needs are not being met, please reconnect with us. If you have questions, please email us at rlaczy@athabascau.ca.

 

 

"Wait. Am I a patient?"

Probably.

We see a patient as an overarching term including individuals with personal experience of a health issue and informal caregivers, including family and friends (CIHR, 2016). Here in Alberta, who has not had an experience of our health system or of a health condition?

 

You are welcome to please apply now (under "I would like to volunteer").

 

 

Collection of your personal information for this Registry: The personal information collected by the Patient Engagement Platform of the Alberta SPOR SUPPORT UNIT and any other personal information collected and maintained as part of your involvement with this Patient/Family Registry will be for the purposes of establishing a database of individuals interested in engaging in health research activities including across the spectrum of the research process and including governance activities. Personal information such as name and contact information may also be disclosed to Alberta Innovates Health Solutions, Canadian Institutes for Health Research, and Alberta Health Services, but only as agreed to by the individual. The personal information you provide to the Patient/Family Registry will be stored in Canada with a third party. This information is collected under the authority of section 33 (c) of the Freedom of Information and Protection of Privacy (FOIP) Act, R.S.A. 2000, C. F-25. It will be protected by the provisions of the FOIP Act. If you have any questions about the collection and use of this information, contact the Patient Engagement Platform Registry Coordinator, Robyn Laczy at 780-492-9695 or at patientengagement@athabascau.ca. The Patient Engagement Platform Lead is Dr. Virginia Vandall-Walker and she can be contacted by emailing virginia@athabascau.ca.

 

 "There is only one thing in life worse than being talked about, and that is not being talked about." -Oscar Wilde

 

     Contact us

     Patient Engagement (PE) Platform

     Alberta SPOR SUPPORT Unit

     Athabasca University

     Room 5-017

     Edmonton Clinic Health Academy

     University of Alberta Campus

     11405 - 87 Avenue

     Edmonton, Alberta

     T6G 1C9

     Phone: 780-492-9695

     Email: rlaczy@athabascau.ca

     Web: www.absporu.ca/patient-engagement