Draft Privacy Practices Questionnaire

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Draft Privacy Practices Questionnaire

Dear Committee Chairs,

As part of our ongoing commitment to safeguarding personal data and aligning with global privacy standards such as GDPR, we are reviewing data protection practices across Research4Life and its committees.

We would be grateful if you could complete the attached questionnaire. The purpose is to understand what personal data is currently collected, used, stored, and shared within your committee’s activities. Your input will help us:

* Identify any gaps or risks in our current practices,
* Ensure consistency with relevant data privacy laws, and
* Contribute to the development of a unified Research4Life privacy policy.

Your insights are vital to this process. We kindly ask that you complete the questionnaire by the end of June 2025.

Thank you in advance for your time & support in taking our questionnaire.

With best wishes

R4L Executive Group

Draft Privacy Practices Questionnaire

First Name

Last Name

About Your Committee

Name of committee:

Main activities of your committee (e.g. training, outreach, communications):

Who are your primary audiences or stakeholders?

Data Collection & Use

What information is being collected?
- Personal information (name, email, address, phone number, etc.)
- Technical data (IP address, browser type, cookies, device info)
- Behavioral data (site usage, preferences, clicks)
- Sensitive data (only if applicable—e.g., health, financial, or demographic info)

What personal data do you collect (e.g. names, emails, affiliations, demographics)?

How do you collect this data (e.g. registration forms, email lists, event signups)?

For what purposes is the data used? (e.g. event invitations, reporting, newsletters)

Data Storage & Access

How is the information collected?
- Directly from users (e.g., form submissions, registrations)
- Automatically (e.g., through cookies or analytics tools)
- From third parties (e.g., social media logins, partners)

Where do you store this data? (e.g. shared drive, spreadsheet, online form tool)

Who has access to this data?

How long do you keep the data? Is there a deletion schedule?

Consent & Communication

Why is the information collected?
- To provide services
- For communication (e.g., newsletters, updates)
- For analytics and improvements
- For marketing (if applicable)
- To comply with legal obligations

Do you ask for consent when collecting personal data? If yes, how?

How do you explain to individuals how their data will be used?

Sharing & Security

How is the information used?
- Internally (by which teams or departments?)
- Shared with third parties (who and for what reason?)
- For automated decision-making or profiling (if any)

Who do you share data with?
- Third-party service providers (e.g., hosting, CRM, payment processors)
- Business partners or affiliates
- Government or legal authorities (if required)

Do you share personal data outside your committee or organization? With whom and why?

What measures do you take to protect personal data (e.g. password protection, limited access)?

Tools & Platforms

What tools/platforms does your committee use that involve personal data? (e.g. Google Forms, Mailchimp, Zoom)

Are these tools configured to support data privacy (e.g. settings for data storage, encryption, consent)?

Reflections

What challenges have you encountered in managing personal data?

Are there any practices you're proud of that others could learn from?

Do you see any areas where your committee could improve its privacy practices?