neoWONDER Privacy Policy

This privacy notice provides you with details of how we collect and process your personal data through your use of our site www.neowonder@org.uk We will outline how we protect your privacy and your rights when it comes to personal data, and demonstrate how we keep your information safe.

By providing us with your data, you warrant to us that you are over 13 years of age.

If you are asked to provide information when using this website, it will only be used in the ways described in this privacy policy. This policy is updated from time to time. The latest version is published on this page.

Who we are and contact details

neoWONDER is the data controller for the purpose of the Data Protection Act 1998 (Act) and the General Data Protection Regulation (GDPR) and we are responsible for your personal data (referred to as “we”, “us” or “our” in this privacy notice).

If you have any questions about this policy please email c.battersby@imperial.ac.uk or write to Dr C Battersby, Neonatal Medicine, Imperial College London, Chelsea and Westminster Hospital Campus, 369 Fulham Road, London, SW10 9NH.

What will your data be used for?

We take the protection of personal data very seriously and will always process this in accordance with the data protection principles and the rights of individuals under the Act and the GDPR.

We use the data you provide to us and the data we collect about you for the following purposes:

• To keep in contact and provide you with the information and resources you request.
• To provide you with information about research and let you know how you can get involved.
• To invite you to participate in research projects.
• To monitor and improve the performance of our website.
• To provide interactive services to you on our website.
• To analyse and improve the services and information we offer.
• To keep a record of your interactions with us.
• To better understand parents, patients and health professional involved with neonatal medicine and their needs, wishes and interests.
• To deliver information we believe will be relevant and interesting to other people with similar interests and characteristics to you.

How do we collect information about you?

You may give us information about you or your organisation by filling in forms on our site or by corresponding with us by phone, e-mail or otherwise. This information may include your name, address, e-mail address and phone number. This will help us keep in contact with you about research, involvement panels, or any of our work with parents or healthcare professionals.

We use your information to provide you with information about us and our research that is of interest to you. We shall keep your information secure however we cannot guarantee the security of your data transmitted to our site.

By submitting information to us, you consent that we may process any personal data contained in it (including sensitive personal data) for the purposes specified and for any other obvious purposes.

When you use our website, we may also collect personal information using “cookies”. You can find out more about this in our Cookies Policy.

What type of information do we collect?

We collect and store different types of information depending on how you interact with neoWONDER. Whenever we ask for personal information, we’ll always try to explain why we need it. In most cases, your name and contact details (email, phone number) are all we need, but we may need other information as outlined below specific to research studies.

Special types of personal information

Under the new data laws, there’s something called “Special Categories of Personal Data”. This data is special because it’s more sensitive, like your ethnicity or age. Bliss doesn’t collect this information routinely, and if we do then we make sure we have a very good reason for doing so. Here are a few examples of when we might collect data that’s a bit more sensitive:

• We will sometimes ask for information about your baby and their experiences while in neonatal care.
• If you submit a case study or support any of our work by sharing your personal experiences with neonatal care, this may sometimes contain sensitive personal information. We will only use this information for the purpose you gave it to us, and will never use this information for profiling or marketing.

With all types of personal or sensitive information you give to us, we will always make sure to tell you why we are asking for it.

How do we use this information?

Everything we do is to help improve the lifelong outcomes of preterm and sick babies. We will always have the families’ best interests and stakeholders (that’s you), whenever we make a decision about personal data.

How do we use this information to keep you updated?

Newsletters

We send regular emails and newsletters about our work, but only if you have opted-in to them. We try not to bombard you either. We might contact you by SMS or phone if you have provided permission.

What are your rights with respect to data protection, and how do we uphold them?

The law states that you have a number of rights over the personal information we hold about you. We take this very seriously, so here is a bit of information about the rights you are entitled to:

• The right to be informed – This is what we are doing here. Any communication we send you and any time we collect information about you there will be a link to this page.
• The right to access the information we hold – You can ask us for the data we hold on you at any time. Please email c.battersby@imperial.ac.uk.
• The right to get your information corrected – If you notice that something is wrong about the information we hold about you, if we spelled your name wrong or you have moved house for example, just let us know and we will update it right away.
• The right to ask us to delete your information – If you don’t want us to use your information at all you can ask us to delete you from our systems, you just have to get in touch as outlined above. There are some reasons we might not be able to delete everything though.
• If you’ve given us a donation, we might need to keep some information for tax or audit purposes so that we comply with the proper regulations. Or if you’re volunteering for us, we’ll have to keep your details for safeguarding reasons. More about our legal obligations in the next section below.
• The right to object to how we use your information – As with asking to be deleted, you can tell us you don’t want us to use your data in a certain way. You can always opt out of all communications with us, for example, by clicking the unsubscribe link in an email or by contacting c.battersby@imperial.ac.uk. You can also ask us not to use your information for any of the things outlined in the “How we use your information section”, but as with the right to be deleted we won’t be able to do this if we have a legal obligation to keep some of your information.
• The right to restrict how we use your information – If you notice something is wrong with the information we hold about you, or you think we’re using it in an incorrect way, you can tell us not to use it. This means we will have to keep your data while we investigate or update it, so it’s not quite the same as the two points above (if you would like more information on this visit the ICO website).
• The right to raise a concern with us – If you have a concern about how we are using your data, just let us know.

How do we keep your personal information safe?

The safety of your personal information is incredibly important to us. We have strict processes to make sure everything is safe, either by physically locking it away if it is on paper or by password protection and encryption if it is digital. We maintain our systems regularly and have rigorous oversight and monitoring of everything we do when it comes to your personal information.

How long do we keep your information for?

We will only keep your information for as long as should be reasonably expected, either for our legal obligations or to maintain our relationship with you. Your data rights are really important to us. You can always tell us if you think we’ve made the wrong call.

Do we share your personal information with other organisations?

We never share or sell your data for marketing to any other organisation. Because we’re a small organisation, there are some services that we have to use from other organisations. Please note the following:

• When we send out large mailings, we may use a mailing house.
• If you interact with us on social media, those companies can sometimes also access your data, so it is a good idea to check your privacy settings e.g. with Facebook, Twitter.
• The fantastic company who built our website, Critical Mission Computing Ltd., will also have access to certain data for monitoring and quality assurance.
• The companies who provide our IT services and support also have access to the data we hold.

What is the law that this policy adheres to?

The General Data Protection Regulation (GDPR) came into force in May 2018, and sets out the law in terms of data processing in the UK and Europe. This law outlines six lawful bases for processing personal information. Here we’ll outline what that means at Bliss.

When you tell us it’s ok (consent)

If we ask “can we contact you by email” and you tick a box marked yes, that’s you giving us your consent to send you emails. We use this for sending you marketing emails, so you’ll never get this type of email unless you have ticked a box saying you’re happy to receive it. You can always withdraw consent at any time by clicking the unsubscribe link.

If you have indicated you would like to be contacted by phone or SMS, we will occasionally contact you in this way. If you wish to withdraw your consent for receiving phone calls and texts, just let us know and we will change this in our records.

Updates to this policy

This policy has been updated to be fully compliant with new GDPR regulations. The policy was updated in September 2020. If you have any questions regarding your personal data or need instructions on how to access or delete your stored data, please contact us: c.battersby@imperial.ac.uk