Privacy notice · Global Blood Health Survey
What we do with your answers
This notice covers the Global Blood Health Survey only. It does not cover the rest of the World Anemia Awareness website, which has its own policy and a different organization behind it.
Who is responsible
The Global Blood Health Survey is run by Blood Health Awareness Group Ltd, which decides what is asked, how answers are analyzed, and what is published. In data protection terms it is the controller.
You can reach us at privacy@bloodhealthawarenessgroup.com. Our registered address is Blood Health Awareness Group Limited, Unit 417, 4th Floor, Tower Two, Lippo Centre, 89 Queensway, Admiralty, Hong Kong.
What we ask for
Thirty-two questions about your health and about what happened when you sought care. Answers about health are treated as a special category of personal data, which means they get a higher level of protection and we need your explicit permission before we can record them at all.
Every question is optional. You can leave any of them blank and still send your answers.
What we do not collect
We do not ask for your name, your email address, or any contact detail in order to take part.
We also do not record your IP address, your browser or device details, the page you arrived from, or any cookie or login. The survey page sets no cookies and runs no analytics. There is no advertising pixel and no third party script of any kind on it.
We use your IP address for a few seconds while you are sending your answers, to stop automated flooding. It is turned into a scrambled value that expires within the hour and is never written alongside your answers.
Why we are allowed to do this
We rely on your consent, which you give with the checkbox before question one. Because the answers include health information, that consent has to be explicit, and it is: the box is unticked when you arrive, it is only about this survey, and nothing is recorded if you do not tick it.
We record which version of this notice you agreed to, so that a later change to this page never changes what you agreed to at the time.
How anonymous it really is
We think you should have the exact picture rather than a reassuring one.
Your answers are stored with nothing attached that identifies you, and there is no key anywhere that connects them to you. At the same time, a combination of answers, for example a country with few responses together with an age band and something distinctive written in your own words, could in principle point at a person. We reduce that risk in three ways: we publish only combined figures, we never publish a figure drawn from a group small enough to single anyone out, and anything you write in your own words is read by a person and cleared before any part of it could appear.
We describe the survey as anonymous because we never ask who you are and we hold nothing that identifies you. This section sets out the one remaining theoretical risk and what we do about it, so that you can judge it for yourself rather than take our word for it.
What you write in your own words
The last question is optional and free text. If you use it, please do not include your name, anyone else's name, or the name of a hospital or a clinician. Everything written there starts out unpublished.
Nothing written in your own words is published unless a person has read it and removed anything that could identify you or anyone else. Where a comment cannot be made safe without losing its meaning, it is not used.
Where it is stored
Responses are held in our own database, on servers in London, UK, and processed under UK and EU data protection law. No third-party form or survey service holds them.
How long we keep it
Raw responses are deleted five years after the findings for that wave are published. We keep them for that long because the survey is repeated each year and every wave is compared against the ones before it, and because researchers who cite the findings may ask us to check them.
The combined figures published in the findings are not deleted, because they are the point of the exercise and they describe groups rather than people.
Who sees it
Answers are analyzed by Blood Health Awareness Group Ltd and by academic or clinical collaborators named in the methodology. They are never sold. They are never shared with an employer, an insurer, or a company.
Organizations that offer the survey to their own community receive combined findings for their region. They do not receive answers from their own people, or anything about any individual. There is no route in the system that would let them.
Sponsors have no access to responses, and no role in the questions, the analysis, or the findings.
Your rights over your survey answers
This is the part most notices are vague about, so we will be direct.
Because we hold nothing that identifies you, we genuinely cannot find your particular response, and we will not ask you for more information about yourself in order to try. That means we cannot show you your answers, correct them, or delete them once they are sent. Data protection law allows for exactly this situation, and it is the trade you make for a survey that never knew who you were.
If you change your mind while you are still on the page, closing it before you send stops anything being recorded.
If you leave an email address
After you send your answers, you can choose to leave an email address. That is a separate choice, a separate request, and a separate table. Nothing connects it to the answers you just sent.
There are two boxes, both unticked, and they mean different things:
- Send me the published findings. Your address is held by us, in the same place as the survey, and used once, when wave one is published. It does not leave the EU.
- Send me blood health education from World Anemia Awareness. This signs you up to the World Anemia Awareness mailing list, which is run by Human Touch Media Foundation. Your address goes to them directly and their privacy policy applies to it from that point.
Ticking one does not tick the other, and leaving both unticked means no address is stored at all, even if you typed one.
Because we do hold your email address, all the usual rights apply to it. Write to us and we will show you what we have, correct it, or delete it. Every email we send carries an unsubscribe link.
Children
This survey is for people aged 18 and over. If you tell us you are under 18, the survey ends there and nothing you entered is recorded.
What the findings can and cannot say
People choose to take this survey rather than being selected at random, so the results describe the experience of the people who took part. They are not a measure of how common anemia or iron deficiency is in any country, and we will not present them as one.
If you are unhappy
Tell us first and we will try to put it right. You can also complain to a data protection regulator: in the UK that is the Information Commissioner's Office, and in the EU it is the supervisory authority in the country where you live.
Changes
If this notice changes in a way that matters, the new version applies only to responses sent after the change. Responses already recorded stay covered by the version that was live when they were sent.
