Beyond Pink & Teal — Advocate Experiences Survey

Your responses are anonymous and confidential. Please don’t name individuals; organizations may be mentioned if relevant. Results will be independently reviewed, and only summarized findings sh

Question Title

* 1. Your role (select all that apply)

Patient advocate (volunteer)

Patient advocate (paid)

Caregiver

Clinician

Researcher

Non‑profit staff

Other (please specify)

None of the above

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* 2. Country/region

Unceded Nation or Territory - please include location of traditional ancestral and unceeded territory in section below - other

Alberta

British Columbia

Manitoba

New Brunswick

Newfoundland and Labrador

Nova Scotia

Ontario

Prince Edward Island (shout out to da' island!)

Quebec

Saskatchewan

Northwest Territories

Nunavet

Yukon

Name of Ancestral Territory

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* 3. In the past 3 years, have you experienced pushback or stigma related to perceived industry ties?

Yes

No - if no skip to question #7

prefer not to say

Other (please specify)

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* 4. Where did it occur? (select all that apply)

Academic setting (review committee, conference, journal)

Patient org / NGO

Government / funder

Media / social media

Healthcare setting

Canada's Drug Agency | CDA-AMC - previoulsy know as CADTH or similar government agency related event - if yes, please commenet in section below - other

Other (please specify)

None of the above

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* 5. What happened? (free text, 300–600 characters)

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* 6. What were the consequences? (select all that apply). indicate if these consequences can be verified by publicaly available reporting or self-reporting

Excluded from panel/committee

Speaking slot withdrawn

Grants/partnership blocked

Online harassment or reputational harm

Self‑censorship / withdrew

Other (please specify)

None of the above

Question Title

* 7. If you checked any of the consequences listed above in Q6, please indicate if these consequences can be verified by publicaly available reporting or self-reporting.

can be verified by publicaly available reporting

can be verified by lived experience or self-reporting.

Other (please specify)

None of the above

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* 8. How did this make you feel?

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* 9. Optional - Share one good experience where transparency + partnership worked. (free text)

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* 10. What guardrails would fix this? (select up to 3)

Standardized disclosure forms

Clear conflict‑management (not conflict‑avoidance) policy

Patient honoraria policy (fair pay, not silence)

Appeals process for exclusion decisions

Code of conduct for online discourse

Training for reviewers/ethics panels

Academic standards, guidelines, legal and other penalties for non-compliance

Other (please specify)

None of the above

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* 11. May we quote your words anonymously in public summaries?

Yes

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* 12. Optional: share contact for a private follow‑up (not published)

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* 13. Final Question: Sharing and Follow-Up

Survey results will be analyzed for key themes and reviewed by independent advisors to ensure accuracy. A public summary will be shared within 90 days of survey closing.

Would you like to receive the summary report and future updates when results are released?

Yes - I'd like to receive the summary and followup information.

No - I prefer not to be contacted

If you selected “Yes,” please provide your email (optional and kept confidential) - Your email will be stored separately from your survey responses and used only to send you the final summary and updates.

Other (please specify)

Beyond Pink & Teal — Advocate Experiences SurveyYour responses are anonymous and confidential. Please don’t name individuals; organizations may be mentioned if relevant. Results will be independently reviewed, and only summarized findings sh

Question Title

* 1. Your role (select all that apply)

Question Title

* 2. Country/region

Question Title

* 3. In the past 3 years, have you experienced pushback or stigma related to perceived industry ties?

Question Title

* 4. Where did it occur? (select all that apply)

Question Title

* 5. What happened? (free text, 300–600 characters)

Question Title

* 6. What were the consequences? (select all that apply). indicate if these consequences can be verified by publicaly available reporting or self-reporting

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* 7. If you checked any of the consequences listed above in Q6, please indicate if these consequences can be verified by publicaly available reporting or self-reporting.

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* 8. How did this make you feel?

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* 9. Optional - Share one good experience where transparency + partnership worked. (free text)

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* 10. What guardrails would fix this? (select up to 3)

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* 11. May we quote your words anonymously in public summaries?

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* 12. Optional: share contact for a private follow‑up (not published)

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* 14. Thanks. We’ll report back with aggregated themes. If you opted in, we may contact you for a confidential follow‑up. Any last words?

Beyond Pink & Teal — Advocate Experiences Survey

Your responses are anonymous and confidential. Please don’t name individuals; organizations may be mentioned if relevant. Results will be independently reviewed, and only summarized findings sh