Data privacy policy

Introduction

At the British Research Panel, we understand that protecting the privacy of our members is essential and that your health information is kept confidential and private. We have therefore taken the necessary steps to meet international data protection requirements.

Please read this privacy policy to learn more about how we collect, use, share and protect your information. This policy explains how we handle your data, how it is stored and processed. The British Research Panel is founded and run by James Lind Care, headquartered in Denmark. James Lind Care is responsible for the processing of data and therefore acts as « Data Controller ».

Contact

If you have any questions you can reach out to James Lind Care using our contact page [link] or you can contact us on our address:

James Lind Care Aps
Købmagergade 60
DK 1150 Copenhagen K.
Denmark
Company Identity Number: 38885693

James Lind Care has appointed a Data Protection Officer (DPO) who can be contacted with questions regarding privacy concerns or your rights under the privacy legislation. You can contact the DPO via e-mail: dpo@jameslindcare.com or via postal letter on the above address attention « DPO ».

Data set

What data do we collect?

James Lind Care collects the following data:

• Personal identification information (Name, email address, phone number, zip code, birth year)
• Personal data concerning health information (Information about members’ chronic diseases and specific health information relevant to participation in a clinical trial)

How do we collect your data?

As a member or possible trial participant in a clinical trial, you provide personal data to James Lind Care. James Lind Care collects data when you:

• Sign up as member of one of James Lind Care’s patient communities and give us your informed consent to register and process your information.
• Volunteer for a clinical trial through James Lind Care and give us your informed consent to register and process your information.
• Fill in questionnaires from one of James Lind Care’s patient communities and give us your informed consent to register and process your information.

James Lind Care is legally authorized to collect, register and process your personal data based on the EU’s General Data Protection Regulation’s (GDPR) article 6-1-a - consent.

When James Lind Care collect, register and process your sensitive personal data such as health information, we do this based on GDPR article 9-2-a – informed consent.

If you are under the age of 18, James Lind Care needs informed consent given or authorised by the holder of parental responsibility over you.

You can withdraw your consent at any time, and afterwards your data will be deleted or anonymised, unless James Lind Care is obliged to retain data for a specific time period due to an applicable law, a court order or other governmental regulation.

If you wish to withdraw your consent, you can contact James Lind Care via our website, by phone, by e-mail or by phone.

Data usage

How will James Lind Care use your data?

James Lind Care only uses your data so that we can:

• Inform you about participation in clinical trials by email and phone.
• Collect, register and process personal data for evaluation of your participation in a clinical trial
• Send you newsletters and surveys from James Lind Care’s patient communities

James Lind Care only uses your data in compliance with the purpose that is stated in the informed consents.

James Lind Care works with multiple informed consent forms and therefore with multiple purposes of using your data.

These purposes include:

• Giving you information about participation in clinical trials
• Enrolling you into clinical trials
• Providing you with information about research and clinical trials
• Offering you participation in relevant surveys about research, trial participation and clinical trials.

Your personal data may also be transferred to third parties acting on James Lind Care’s behalf. This will be for further processing in accordance with the purpose for which the information was originally collected or otherwise legally treated. This could be the provision of services, data management or technical support.

These third parties have entered into an agreement with James Lind Care to only process personal information for the agreed purpose on behalf of James Lind Care. In addition, personal data may be disclosed to a third party if James Lind Care is obliged to do so due to an applicable law, a court order, a governmental regulation, or if such disclosure is otherwise required as support for a criminal case or other legal investigation or procedure.

How does James Lind Care store your data?

James Lind Care securely stores your data at a database located in Denmark. Your data is stored in data-processing facilities and on servers that act on our behalf, and that James Lind Care takes responsibility for. The database is exclusively subject to the employees of James Lind Care.

James Lind Care will only collect and process personal data for as long as it takes for James Lind Care to be able to fulfill the purpose of which the consent was given. James Lind Care will do so in a way

that permits identification of the individual for no longer than is necessary and only for the purposes for which it was processed.

Your rights

What are your data protection rights?

James Lind Care would like to make sure you are fully aware of all your data protection rights.

Every user is entitled to the following:

The right to access

As a data-subject, you have the right to request James Lind Care for confirmation as to whether or not personal data concerning you are being processed and if so, request a copy of your personal data.

The right to rectification

As a data-subject, you have the right to request that James Lind Care correct any information that you believe is inaccurate. You also have the right to request James Lind Care to complete information that you believe is incomplete.

The right to erasure

As a data-subject, you have the right to request that James Lind Care erase your personal data.

The right to restrict processing

As a data-subject, you have the right to request James Lind Care restrict the processing of your personal data.

The right to object to processing

As a data-subject, you have the right to object to James Lind Care’s processing of your personal data.

The right to data portability

As a data-subject you have the right to request that James Lind Care transfer the personal data that we have collected about you to another organization, or directly to you.

The right to complain to a supervisory authority

As a data-subject you have the right to complain about James Lind Care’s processing of your personal data to a supervisory authority. In france the supervisory authority is CNIL (https://www.cnil.fr/en/home) and in Denmark it is Datatilsynet (https://www.datatilsynet.dk/)

If you want to exercise any of your rights stated above, you can contact James Lind Care. If you have any requests regarding your rights stated above, you can always contact the DPO of James Lind Care.

James Lind Care has up to one month to respond to you, but we aim to respond with undue delay.

Changes to James Lind Care’s Privacy Policy

James Lind Care regularly reviews its privacy policy and places any updates on this web page. This privacy policy was last updated on 22nd January, 2021.