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All-Party Parliamentary Group on Blood Cancer: Active Monitoring Inquiry

Call for Evidence: Patient, Family and Carer Questionnaire

About this questionnaire:
The All-Party Parliamentary Group (APPG) on Blood Cancer is conducting an inquiry into people’s experiences of active monitoring following a diagnosis of blood cancer.

Active monitoring, often called “watch and wait”, is an approach in which a person’s condition is regularly monitored but treatment is not started immediately. Treatment may begin later if test results, symptoms or other aspects of the condition change.

This questionnaire asks about your own experience of active monitoring, or the experience of someone you support. Throughout the questionnaire, “active monitoring” refers to monitoring before a person has received treatment for their blood cancer. We recognise that different terms may be used by different clinical teams. Please complete the questionnaire if the description above reflects your experience, even if your healthcare team uses a different term.
Data Protection & Privacy Notice
All-Party Parliamentary Groups (APPGs) are informal cross-party groups that have no official status within Parliament. They are run by and for Members of the Commons and Lords, though many choose to involve individuals and organisations from outside Parliament in their administration and activities. A full list of the Blood Cancer Alliance members can be found here.

1. Who We Are and What We Do: This survey is being conducted by M+F Health ("we/us"). We are the Data Controller for this research, which is being funded by the Blood Cancer Alliance. This notice provides a summary of how we handle your information. You can view M+F Health’s Privacy Policy here.

2. Your Consent & Our Legal Basis: Because this survey asks about your health, we are processing "Special Category Data". In accordance with the UK GDPR, the Data Protection Act 2018 (DPA 2018) and the Data (Use and Access) Act 2025, our legal basis for processing this information is your explicit consent, which you can grant by actively ticking the opt-in box below.

Your participation is entirely voluntary. You can withdraw your consent and exit the survey at any time prior to submission by closing your browser window.

3. How Your Data Will Be Used: The data collected will be used to understand people’s experiences of active monitoring, also known as “watch and wait”, following a diagnosis of blood cancer. It will inform an inquiry coordinated by the Blood Cancer Alliance and the All-Party Parliamentary Group on Blood Cancer. Only anonymised or pseudonymised responses will be used to inform development of policy materials from the All-Party Parliamentary Group on Blood Cancer, to inform engagement with Government on improving active monitoring services for blood cancer patients.

4. Confidentiality: Your privacy is strictly protected. Only aggregated, anonymous insights will be published and no personally identifiable information that is collected as part of this survey will be shared with any unauthorised third parties.

5. Data Storage and Retention: Your data will be stored securely on UK-compliant servers and will be retained for a maximum of 1 year for ongoing research validation, after which it will be permanently and securely destroyed.

6. Your Rights and How to Complain: Under UK data protection law, you have the right to request access to, rectification of, or erasure of your data (where feasible and proportionate).

If you have any questions, wish to exercise your rights, or have a complaint about how your data has been handled, please contact our Data Protection Officer at data.compliance@mandfhealth.com in the first instance. We operate a mandatory internal complaints review procedure and will investigate your concern promptly. If you remain unsatisfied with our response, you have the right to escalate your complaint to the Information Commissioner’s Office (ICO) at www.ico.org.uk.
1.Participant Opt-In (Action Required)

To participate in this research, please read the statement above and select the box.(Required.)