Data & privacy

Privacy notice

Draft for ICPCN review. This wording should be checked and approved by ICPCN before public launch.

Who we are

The ICPCN Research Hub is run by the International Children's Palliative Care Network (ICPCN), a registered charity, to connect and strengthen children's palliative care research worldwide.

What we collect, and why

Your email address: used to sign you in (we send one-time codes instead of storing passwords) and to deliver messages other researchers send you through the hub. It is never displayed publicly.
Your researcher profile: the details you choose to enter (name, role, qualifications, affiliations, country, bio, research interests). You control who sees it: everyone, signed-in researchers only, or nobody. Profiles are reviewed by ICPCN before first appearing.
Studies you add: the description of a study you submit to the studies directory is public once ICPCN approves it, and names you as the lead if you choose to link it to your profile. Please don't include participant details.
Your contributions: documents published on the hub carry their author's name, with a public record of published versions.
Feedback, suggestions and reports: what you send through the feedback form, the “suggest a resource” box, event suggestions or a content report, along with the page you sent it from. If you're signed in your email address is attached so we can reply; signed out, giving one is optional and it is used for nothing else. Only ICPCN administrators see these.
A record of your sign-ins: the date and time of each successful sign-in, kept so ICPCN can look into unusual activity on an account and answer the question “did someone else get into this?”. Only ICPCN administrators can see it. We do not record your IP address, your location or your device, and we don't log which pages you read: it is a security record, not analytics. Sign-in codes themselves are stored only as a one-way hash, so nobody, including us, can read them back.

What we don't do

We never sell or commercialise your data, and never share it with advertisers.
We don't use tracking or advertising cookies, only a session cookie to keep you signed in.
We never show your email address to other users; contact happens by relay, and you choose whether to reply.
We don't build a picture of how you use the hub. Nothing records which researchers, papers or guides you look at.

Your choices and rights

Edit your profile, change its visibility, or hide it entirely at any time.
Ask for your account and data to be removed by contacting ICPCN. Removal is permanent.
Request a copy of the information the hub holds about you.

How long we keep it

Your profile, your messages and your sign-in record are kept for as long as your account exists. Delete your account and they are deleted with it, sign-in record included; encrypted backups then roll off after 14 days. The one exception is documents: a guide you have published carries your name publicly, so accounts that have written one can't be deleted from the hub directly, and you should contact ICPCN instead.

Where your data lives

The hub is hosted on Amazon Web Services in London (eu-west-2 region), with encrypted backups retained for 14 days. Access to the underlying systems is limited to the hub's technical administrators.