HEALTHTRACKER PRIVACY NOTICE

How we use your personal information

Your information will be held by HealthTracker Ltd. This privacy notice is to let you know how the company promises to look after your personal information. This includes what you tell us about yourself and what we learn by having you as a HealthTracker system user. This notice also tells you about your privacy rights and how the law protects you.

Our Privacy Promise

We promise:

To keep your data safe and private

Personal information and the law

This section tells you who we are, what your personal information is, and how we get it. It explains how the law protects you by controlling what is allowed to happen to it.

1. Who we are?
2. How the law protects you?
3. Groups of Personal Information
4. Where we collect personal information from
5. How long we keep your personal information
6. If you choose not to give personal information
7. Cookies

The control you have

This section covers how to complain or withdraw your consent. It also tells you how you can get a copy of your personal information or ask for it to be changed or removed.

8. How to complain
9. How to withdraw your consent
10. How to get a copy of your personal information
11. Your rights-What if you want us to stop using your personal information?

How personal information is used

This tells you who we share personal information with.

12. Who we share your personal information with

1. Who we are

This section gives you the legal name of the company who holds your personal information - known as the ‘legal entity’.

The HealthTracker Ltd is an SME that was set up in January 2012 and helps collect data necessary for clinical and research projects and holds the data. Professor Paramala Santosh is the current Chief Executive Officer and co-owner of the company and Dr Federico Fiori is the Chief Technical Officer and Data Protection Officer. The HealthTracker™ platform is a web-based health monitoring system that was originally developed at Guy’s St. Thomas NHS Trust and Great Ormond Street NHS Children’s Trusts, which has been transferred to HealthTracker Ltd, with royalties being paid to the NHS. HealthTracker Ltd specialises in the development and implementation of scalable secure online cloud-based solutions for health monitoring. The HealthTracker™ platform contains multi-media questionnaires - patient centered outcome measures (PCOMs) of symptoms, sideeffects, and quality of life and its analytics. The HealthTracker™ enables children, adolescents, adults of all ages with a range of disorders, parents (or carers) and teachers to input data through innovative questionnaires. The system allows clinicians and researchers to access and view data that are essential for monitoring the effects of treatments or specific research that is being done and you have given consent to.

2. How the law protects you

This section sets out the legal reasons we rely on, for each of the ways we may use your personal information.

As well as our Privacy Promise, your privacy is protected by law. This section explains how that works.

Data Protection law says that we are allowed to use personal information only if we have a proper reason to do so. This includes sharing it outside HealthTracker Ltd. The law says we must have one or more of these reasons:

To fulfil a research or clinical project that you have consented to participate in,
When it is our legal duty, or
When it is in our legitimate interest, or
When you consent to it.

When we have a reason of our own to use your information, this is called a “legitimate interest”. We will tell you what that is, if we are going to rely on it as the reason for using your data. Even then, we will not unfairly go against your interests.

The law and other regulations treat some types of sensitive personal information as special. This includes information about racial or ethnic origin, sexual orientation, religious beliefs, trade union membership, health data, and criminal records. We will collect or use these types of data only with your consent and only if it necessary to do so.

3. Groups of Personal Information

We use many kinds of personal information that you have provided to us. They are grouped together as shown below. The groups of personal information we use are all listed here so that you can see what we may know about you. We don’t use all this data in the same way. Some of it is useful for research, or for providing services to you, or your child or in the case you are clinician or research worker of a patient, may help clinic or project. But some of it is private and sensitive and we treat it that way.

Type of personal information	Description
Socio-Demographic	This includes details about your work or profession, nationality, education and where you fit into general social or income groupings
Social Relationships	Your family, friends and other relationships
Usage Data	Other data about how you use our website
Special types of data	The law and other regulations treat some types of personal information as special. We will only collect and use these types of data if the law allows us to do so:
	• Racial or ethnic origin
	• Religious, political or philosophical beliefs
	• Genetic and bio-metric data
	• Health data
	• Lifestyle information, including data related to sex life or sexual orientation
	• Criminal records of convictions and offences
Consents	Any permissions, consents or preferences that you give us. This includes things like how you want us to contact you.

4. Where we collect personal information from

This section lists all the places where we get data that counts as part of your personal information.

We may collect personal information about you from you, your carer(s), teacher, your clinician or your hospital records or other research or health related entities, which you agree we can contact.

Data you give to us

When you use our websites
If you take part in projects or research or use our website as part of your clinical care

Data we collect when you use our services

This covers the details about when you access our website(s)

Data from outside organisations

Medical professionals
Carers, parents, teachers, employers if part of project you have consented to

5. How long we keep your personal information

This section explains how long we may keep your information for and why.

We will keep your personal information for as long as you are a HealthTracker user.

We may keep your data for up to 10 years after you stop being a HealthTracker user. The reasons we may do this are:

To obey rules that apply to us about keeping records
To comply with the rules of the research or clinical project you consented to, for which data was being collected through the HealthTracker system
To study user data as part of our own internal research
To respond to a question or complaint

We may also keep your data for longer than 10 years if we cannot delete it for legal, regulatory or technical reasons.

We will always attempt to only use your personal information for the duration necessary for those purposes and will make sure that your privacy is protected.

6. If you choose not to give personal information

You can choose not to give us access to your personal information by

i. Withdrawing from the clinical or research project that is using the HealthTracker system to collect data that you have consented to.
ii. You can decline to use the HealthTracker system at any time.

7. Cookies

Cookies are small computer files that get sent down to your PC, tablet or mobile phone by websites when you visit them. They stay on your device and get sent back to the website they came from, when you go there again. Cookies store information about your visits to that website, such as your choices and other details. Some of this data does not contain personal details about you or your business, but it is still protected by this Privacy notice.

8. How to complain

This section gives details of how to contact us to make a complaint about data privacy. It also shows you where you can get in touch with the government regulator.

Please let us know if you are unhappy with how we have used your personal information. You can contact us by email at federico@healthtracker.co.uk.

You also have the right to complain to the regulator, and to lodge an appeal if you are not happy with the outcome of a complaint. In the UK this is the Information Commissioner’s Office. Find out on their website how to report a concern.

9. How to withdraw your consent

This section explains what to do if you no longer want us to hold or use your personal information.

You can withdraw your consent at any time.

Please contact us by email at federico@healthtracker.co.uk if you want to do so.

This will only affect the way we use information when our reason for doing so is that we have your consent. See the section 'Your Rights' about more generally restricting use of your information.

10. How to get a copy of your personal information

This section tells you where to write to us to get a copy of your personal information.

You can get a copy of all the personal information we hold about you by contacting us through email at federico@healthtracker.co.uk.

11. Your rights - What if you want us to stop using your personal information?

What if you want us to stop using your personal information? This section explains about your right to object and other data privacy rights you have - as well as how to contact us about them.

You can also ask us to delete, remove, or stop using your personal information if there is no need for us to keep it.

There may be legal or other official reasons why we need to keep or use your data. But please tell us if you think that we should not be using it.

If you want to object to how we use your data or ask us to delete it or restrict how we use it or, please contact us by email at federico@healthtracker.co.uk.

12. Who we share your personal information with

We may share your personal information for clinical or research purposes with organizations who have got you to use the HealthTracker system to capture data. Occasionally, information could be shared in an anonymized manner with no identifiable information with outside organisations such as other universities, research entities or medical professionals or in recognized meetings, congress or symposia. In all these cases your privacy will be respected and we will make sure that you are not recognizable.