Data privacy policy

How we protect your data

Below you will find our data privacy policy.
You are always welcome to contact us with further questions.

Read our FAQs page about membership and clinical trials.

Introduction

At the British Research Panel, we understand that protecting the privacy of our members and those visiting our websites is essential and that your health information is 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 information online. This explains how we handle your data, how it is stored and processed. Since the British Research Panel is founded and run by the international patient organisation James Lind Care, headquartered in Denmark, the responsibility and processing of the data is based on James Lind Care.

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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 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 James Lind Care’s patient communities and give us your informed consent to register and process your information.
- Use or view our website via your browser’s cookies

James Lind Care is legally authorized to collect your personal data based on the EU’s General Data Protection Regulation’s article 6; 1a about informed consent.

If you are under the age of 18, James Lind Care needs an 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.
If you wish to withdraw your consent, you can always contact DPO of James Lind Care, Rasmus Hjorth at rasmushjorth@jameslindcare.com.

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.
- 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 consent.
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 use personal information for the agreed purpose. They cannot sell your personal information to third parties or disclose it to third parties except as may be required by law. 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, court order, 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, its contents will remain with James Lind Care. Your data is stored in data-processing units 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 obtain and process personal data for as long 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 copies of your personal data. James Lind Care may charge you a small fee for this service.

- 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, under certain conditions.

- 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, under certain conditions.

- 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, under certain conditions.

- The right to data portability
As a data-subject you have the right to request that James Lind Care transfer the data that we have collected to another organization, or directly to you, under certain conditions.

If you have any requests regarding your rights stated above, or you want to exercise any of these rights, you can always contact DPO of James Lind Care, Rasmus Hjorth at rasmushjorth@jameslindcare.com.
James Lind Care has one month to respond to you. Your request will be handled with undue delay and within the timelines determined in the EU’s General Data Protection Regulation’s article 12, 3.

Cookies

What are cookies?

Cookies are text files placed on your computer to collect standard internet log information and visitor behavior information. When you visit our websites, James Lind Care may collect information from you automatically through cookies or similar technology.

How does James Lind Care use cookies?

James Lind Care uses cookies in a range of ways to improve your experience on our website, including:
- Understanding how you use our website
- Making your experience of visiting our website better and more effective

What types of cookies does James Lind Care use?

There are a number of different types of cookies, however James Lind Care’s website uses:
- Functionality – James Lind Care uses these cookies so that we can recognize you on our website and remember your previously selected preferences. These could include what language you prefer and your location. A mix of first-party and third-party cookies are used.
- Advertising – James Lind Care uses these cookies to collect information about your visit to James Lind Care’s website, the content you viewed, the links you followed and information about your browser, device as well as your IP address. James Lind Care sometimes shares some limited aspects of this data with third parties for advertising partners. This means that when you visit another website, you may be shown advertising based on your browsing patterns on our website.

How to manage cookies?

You can set your browser to not accept cookies. The above website tells you how to remove cookies from your browser. However, some of our website features may not function as a result.

Privacy Policies of other websites
The James Lind Care’s website contains links to other websites. James Lind Care’s privacy policy applies only to James Lind Care’s website and the communities’ websites. If you click on a link to another website, you should also read their privacy policy.

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.

How to contact the appropriate authority?

Should you wish to report a complaint or if you feel that James Lind Care has not addressed your concern in a satisfactory manner, you may contact the Information’s Commissioner’s Office.

UK
Email: casework@ico.org.uk
Website: https://ico.org.uk