(the legal stuff)

This privacy policy follows the General Data Protection Regulation (GDPR) which was introduced in May 2018. For further information on GDPR you can view information via the EU, Wikipedia or ICO (others sources are available).

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WISP-PRO is platform that collects patient reported outcomes for scientific research. The privacy of our users is important to us and we have prepared this Privacy Policy to explain to you how we collect, use, and share information we obtain through your use of the app and/or website.

THE PURPOSE OR REASON FOR PROCESSING YOUR PERSONAL DATA.

We only use your information where you’ve given us your consent, where it is necessary to deliver the WISP-PRO service, where it’s necessary to exercise or comply with legal rights or obligations, or for normal purposes of the kind set out in this policy.

WHAT PERSONAL DATA DO WE COLLECT?

Everyone who uses our platform will have bits and pieces of information about them collected, stored and processed.

However, we don’t collect more information than we need.

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We can’t provide information without information! So, when you use our platform, we have to collect, keep and share some personal data and ask that you agree to that in line with this policy.

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We collect information in two ways:

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  1. You give it to us voluntarily

Information you choose to give us might include personal data needed to access information resources. This ranges from your professional background, the number of years you have been practising if you are a healthcare professional, your preferred information resources, to the basic stuff for making a search query with an Information Supplier such as names and contact details. It can also include content like the comments and recommendations you upload to the WISP-PRO platform to share with other users. Most importantly, it’s always up to you whether or not you choose to give us this kind of information.

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  1. We generate or collect it automatically

We generate or collect some information from your computer or device automatically as you use the WISP-PRO platform. This includes stuff like your IP address, information about the device and browser you are using to access the WISP-PRO platform, and most importantly the answers you provide for study-specific questions when you are enrolled in a study with us and are prompted a questionnaire.

We use your personal data when we need to deliver the WISP-PRO platform or fulfil an information need, such as finding research related to the treatment of a disease, with us or an Information Supplier. To improve or optimise the WISP-PRO platform and to otherwise protect or further our legitimate interests.

OUR LEGITIMATE INTERESTS:

  • Identifying and correcting faults with our app or areas for improvement through use of information like browser type, operating system, locale and language information and general site activity alongside any specific feedback you may provide to us from time to time;

  • Providing user service or help services to you in relation to any questions you raise or issues you might encounter while using the WISP-PRO platform. For example, although it is the ultimate Information Supplier (like Wikipedia) who is responsible to you for any issues you might have with the information itself, dispersed through WISP-PRO, if you or the Information Supplier contacts us regarding an issue with this information we’ll need to use some of your personal data to be able to assist you;

  • Understanding and evaluating how, when and why people are using WISP-PRO for the purposes of delivering, evaluating, improving and optimising the delivery of the WISP-PRO platform.

  • Personalising your experience of the WISP-PRO platform in order to ensure your experience on WISP-PRO is as helpful, efficient and relevant as possible.

WHO ARE THE RECIPIENTS OF THE DATA AND WILL HAVE ACCESS TO THE INFORMATION COLLECTED ON WISP-PRO?

We will be interested in many variables related to the questionnaires of a study that you are enrolled in. These variables will be quantified via the app itself, when you are using it.

HOW DO WE KEEP YOUR PERSONAL DATA SECURE?

Keeping your personal data secure is our highest priority. We limit data access to only those WISP-PRO group members who have to come into contact with your information to conduct the research described in this application.
Unfortunately, no website or app can guarantee complete security but we have created a security programme designed to keep your personal data as safe as possible. It uses a range of technical, organisational and administrative security measures and best-practice techniques, depending on the type of data being processed. For example, the computer systems we use to store your data have access limitations and in-cloud based servers that use industry-standard disc encryption. We use TLS and HTTPS encryption to protect your personal data when we transfer it across the internet. And we carry out security assessments on Third Party Processors who handle your data.

HOW LONG DO WE STORE YOUR DATA?

We have different retention policies for different types of personal data, taking into account:

  • The purpose for collecting the personal data;

  • How long it will take to fulfil that purpose; and

  • Any specific reason or overriding legal obligation to retain the personal data for a specific amount of time.

Also, if you have an account with us, we will keep personal data such as your email address, name and other details (such as your professional background and the number of years you have been practising) so you can log in and access the WISP-PRO platform for as long as you have an account. We may keep other information indefinitely – such as site activity linked to an IP address – which we use to help us understand our users.

No matter how long the retention period, you can ask us to delete your personal data in certain circumstances.

HOW LONG DO WE STORE YOUR PERSONAL DATA?

We only keep your data for as long as we need it. We’ll then either delete it or anonymise it so it doesn’t identify you. We treat data differently depending on what it’s used for, but you can ask us to delete your personal data at any time.

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More about how long we store your personal data.

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We keep your personal data only for as long as we need to. This depends on why it was collected, or if we have a continuing legal basis to do so (such as to fulfil a contract between us, perform a service you requested or for our legitimate interests). Rest assured, if we no longer have a reason or legal requirement to process your personal data, we will delete it or store it in a way so that it no longer identifies you.

YOUR RIGHT TO LODGE A COMPLAINT WITH THE DATA PROTECTION COMMISSIONER.

If you have unresolved concerns, you have the right to complain to a data protection authority.

YOUR RIGHT TO REQUEST ACCESS TO YOUR DATA AND ASK FOR A COPY OF IT

If you’ve got a WISP-PRO account, you can request for access or to delete key personal data associated with your profile at any time by emailing the research group.

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You also have rights in relation to the personal data we have about you. You can exercise these rights by getting in touch with us via our contact details.

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These rights may be limited, for example if fulfilling your request would reveal personal data about another person, or if you ask us to delete information which we are required by law or have compelling legitimate interests to keep. If you have unresolved concerns, you have the right to complain to a data protection authority.

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To the extent that you’re unable to satisfactorily exercise any of these rights via your Profile, you can do so by contacting our Data Protection Officer by post at WISP-PRO, C9, Insight Centre for Data Analytics, Science Centre East, O’Brien Centre for Science, UCD, Belfield, Dublin 4.

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You have the right to ask us for a copy of your personal data; to correct, delete or restrict processing of your personal data; and to obtain the personal data you have provided to us in a structured, portable, machine readable format. In addition, you can object to the processing of your personal data in some circumstances (in particular, where we don’t have to process the data to meet a contractual or other legal requirement).

WILL THERE BE AUTOMATED DECISION MAKING, INCLUDING PROFILING?

Personalising your experience involves us creating a profile and timeline of your activity on WISP-PRO. However, we are careful to ensure that our activities do not involve undertaking any profiling or automated decision making that might have any legal or other significant effects on you (including your career).
We generate or collect some information from your computer or device automatically as you use our services. This includes stuff like your IP address, information about the device and browser you are using to access our services, the website URL you visited us from and the third party sites you visit when you click on links to exit the WISP-PRO site or app. It also includes details of the search queries you have made via WISP-PRO. We may also know your location from your mobile or your IP address. This helps us to improve your experience and make sure you receive the content that’s most relevant to you.

YOUR RIGHT TO OBJECT TO AUTOMATED PROCESSING INCLUDING PROFILING IF YOU WISH.

Personalising your experience on WISP-PRO involves us creating a profile and timeline of your activity on the platform. However, we are careful to ensure that our activities do not involve undertaking any profiling or automated decision making that might have any legal or other significant effects on you.

You must inform the data subject if you intend to further process their personal data and provide the data subject with information on that other purpose.

HOW WE USE PERSONAL DATA TO FULFIL ‘INFORMATION NEEDS’.

Personalising your experience on WISP-PRO involves us creating a profile and timeline of your activity on the platform. However, we are careful to ensure that our activities do not involve undertaking any profiling or automated decision making that might have any legal or other significant effects on you.

HOW WE USE PERSONAL DATA TO FULFIL ‘INFORMATION NEEDS’.

Ensuring our services are accessible and usable by you on your specific device, for example by altering the way we display information to you based on your device type;

Generating results in response to your search queries, for example providing you with a list of information sources that best meet your requirements;

Where you select an Information Supplier that you’d like to make a search query with either:

redirecting you to their platform along with whatever data is necessary to enable them to recognise you and the search queries you had selected on WISP-PRO, including data about your browser or device and the details of your information-need(s); or facilitating the completion of that query from within our services, which will involve us collecting and transferring to that Information Supplier all information required to enable the search query to be processed, including your profession, previous information-needs or academic qualification.

Contacting you with messages, notifications or alerts that are necessary in order to deliver our services requested, such as new information resources that relate to your historical search queries or other essential communications like emerging research papers and notifications about changes or updates to our services or to this policy.

Where you have created an account with us, maintaining and administering this and ensuring that it is kept up-to-date and accessible;

TRANSFER OF YOUR DATA OUTSIDE OF THE EU

Your data will only be processed by suppliers who provide appropriate contractual safeguards for the information they process. We store the information we collect from you on secure servers in various locations, depending on where you are in the world when you access our site. Currently, we use Google servers that are located in Amsterdam, Ireland, Frankfurt. We will only store European users’ personal data outside the European Economic Area where a European Commission-approved method of validating the transfer has been put in place.