Have you had a seat at the table?

Have you been a patient representative on any healthcare body in Canada?

Patients are increasingly involved in the healthcare system as members of cancer agencies, hospital boards or family councils, on regional health boards and on research panels for decision on research spending.

The Canadian Cancer Survivor Network wants to provide patients with the best possible orientation and information to participate and make decisions about health care.

We invite you to share your experiences; your input is essential in helping CCSN to develop new tools and methods to prepare patients to take their place at the table.

Question Title

* 1. What kind of board or committee did you sit on?

Cancer agency committee

Cancer agency board

Hospital board

Hospital patient and family committee

Regional health board

Regional health committee

Research peer review committee

CADTH or pCODR committee

Research ethics board

Provincial health technology assessment committee

CIHR or Health Canada committee or advisory group

Other: please indicate a different committee or provide additional information on your response to the above options.

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* 2. Did you receive orientation to the board, committee or other body?

Yes

If yes, please describe the orientation you received, including length of time and some info on the content.

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* 3. Was the orientation useful to prepare you to engage on the board or committee?

Yes

If you answered no, what would have made you better prepared?

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* 4. In meetings you attended:

	Yes	Sometimes	No
Did you feel your opinions were respected?	Did you feel your opinions were respected? Yes	Did you feel your opinions were respected? Sometimes	Did you feel your opinions were respected? No
Did you feel you had equal opportunity to voice your opinions?	Did you feel you had equal opportunity to voice your opinions? Yes	Did you feel you had equal opportunity to voice your opinions? Sometimes	Did you feel you had equal opportunity to voice your opinions? No
Did you receive reimbursement for any costs of participating?	Did you receive reimbursement for any costs of participating? Yes	Did you receive reimbursement for any costs of participating? Sometimes	Did you receive reimbursement for any costs of participating? No
Overall, did you feel your participation made a difference in understanding patients' experiences?	Overall, did you feel your participation made a difference in understanding patients' experiences? Yes	Overall, did you feel your participation made a difference in understanding patients' experiences? Sometimes	Overall, did you feel your participation made a difference in understanding patients' experiences? No

Please provide any comments to explain your ratings.

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* 5. How satisfied or dissatisfied are you with your experience as a patient representative?

Very satisfied

Somewhat satisfied

Neither satisfied nor dissatisfied

Somewhat dissatisfied

Very dissatisfied

Please explain why you were satisfied or dissatisfied.

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* 6. Through which of the following formats would you prefer to learn about being an effective patient representative?

Webinars

Written material

Audio material (podcasts, for example)

Photos, infographics, images or illustrations

Social media posts on Twitter, Facebook

YouTube videos

In person training

Mentoring

Other (please specify)

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* 7. How often would you like training to be available?

Once a week

Every two weeks

Monthly

On demand, when I need it

Question Title

* 8. Please indicate the kind of information that would be helpful to you as a patient representative.

	Yes	No
Healthcare in Canada: who does what?	Healthcare in Canada: who does what? Yes	Healthcare in Canada: who does what? No
Opportunities for patient representatives in Canada	Opportunities for patient representatives in Canada Yes	Opportunities for patient representatives in Canada No
The patient experience on healthcare boards and committees	The patient experience on healthcare boards and committees Yes	The patient experience on healthcare boards and committees No
What would be required of me as a patient representative?	What would be required of me as a patient representative? Yes	What would be required of me as a patient representative? No
Decision making in healthcare - the role of various agencies	Decision making in healthcare - the role of various agencies Yes	Decision making in healthcare - the role of various agencies No

Other (please specify)

Thank you for completing this survey! The information you provided will help the Canadian Cancer Survivor Network design educational materials for patients, survivors and family members better prepare themselves to act as patient representatives.

If you are interested in accessing educational materials or becoming a patient representative, please contact CCSN at jmanthorne@survivornet.ca