Data & privacy

Privacy notice

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. ICPCN administrators can see messages sent through the hub, so that a complaint about spam or harassment can be looked into.
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. The entry will name you as the lead if you choose to link it to your profile. Please don't include participant details.
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; if 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. The only other use we may make of it is a monthly total of how many members signed in, which names nobody. 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 advertising cookies, and we set no analytics cookie unless you say yes (see Google Analytics). The cookies the hub sets for itself are the session cookie that keeps you signed in and, for ICPCN staff working in the admin area, one that lasts a few seconds to carry the confirmation message after an action and is then deleted. Neither tracks anyone.
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. We count how often pages are opened, as totals only (see Counting how the hub is used), and nothing the hub keeps records which researchers, papers or guides you look at. If you allow Google Analytics, Google's cookie lets it tell that a series of page views came from the same browser; it is never told who you are, and never which researcher's profile you opened.

Counting how the hub is used

ICPCN is a charity, and the hub's funding depends on showing that it reaches people. So we keep simple totals:

how many times each section of the hub was opened each day, and how many times each guide, talk, paper, study, research group or topic page was opened in a month;
how many searches were run each day and how many found nothing, along with the words searched for, as a monthly total for each search;
how many times people followed a link out of the hub (to a paper, a recording, a listed resource, a session sign-up or the WhatsApp community) or downloaded a calendar file for a session.

These are totals and nothing more. They are not linked to your account, your email address, your IP address or your device. We set no cookie and store nothing on your device to collect them, and nothing in them can show what any one person read or searched for.

We never count how often any one researcher's profile is opened. Opening a profile adds one to the total for the researchers section as a whole, and to nothing else.

Search words are kept on their own, never beside an account. A search that contains an email address, or has no letters in it, is not kept at all, and a search typed fewer than three times in a month is deleted about three months after that month ends.

Visits from search engines and other automated tools are left out, and if your browser sends a Global Privacy Control or Do Not Track signal your visit is not counted.

We also report totals drawn from what members have already put on the hub: for example the number of approved researchers in each country, how many offer or are looking for mentorship, and how many messages were sent through the contact relay. When we share figures with funders or publish them they are always totals, never names, and we leave out any figure small enough to point to one person.

Google Analytics

The totals above tell ICPCN that the hub is used. They can't show how people find it or move through it, which is what we need to improve it and what funders increasingly ask for. For that we use Google Analytics, and only if you agree.

Nothing loads until you choose. The first time you visit we ask. Until you press “Allow analytics”, nothing is requested from Google and no analytics cookie is set. “No thanks” is remembered and we don't ask again. If your browser sends a Global Privacy Control or Do Not Track signal we take that as a no without asking.
You can change your mind at any time with “Cookie settings” at the foot of every page. Switching it off stops it at once and deletes Google's cookies from your browser.
What Google receives if you agree: which pages of the hub were opened and in what order, roughly where in the world you are (country and city, worked out from your IP address, which Google does not keep), what kind of device and browser you use, and the site you came from. Google sets cookies named _ga to tell that page views came from the same browser; they last up to two years unless you switch analytics off.
What Google is never sent: your name, your email address or whether you are signed in; which researcher's profile or contributor page you open (these are reported only as “a researcher profile”, because the address is somebody's name and they have not agreed to anything); what you search for; and anything you do in your own profile, your workspace or while signing in. ICPCN staff are not measured at all.
No advertising. Google's advertising features are switched off. The figures are used by ICPCN to run and report on the hub, and are not used to build advertising profiles or sold to anyone.
Google acts on ICPCN's instructions and may process this information in the United States and other countries, under the safeguards in its data processing terms. ICPCN keeps the detailed records in Google Analytics for two months; after that only totals remain.

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.
Switch Google Analytics on or off with “Cookie settings” at the foot of any page.

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 usage totals hold nothing about you, so there is nothing in them to delete.

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.

Changes to this notice

19 September 2026: added the section “Google Analytics”, which is used only with your consent, and reworded “What we don't do” to match. The hub previously used no analytics service.
18 September 2026: added the section “Counting how the hub is used” and reworded the two sentences that used to say the hub keeps no usage figures at all. Also added that ICPCN administrators can see messages sent through the hub, and that the admin area sets a short-lived cookie to show confirmation messages.