Privacy Policy
This privacy notice explains how James Lind Care processes and protects your personal information when you contact us, engage in one of our communities or interact with us in any other way.
James Lind Care Patient Communities
James Lind Care runs several communities for patients across Europe. These are specific for each country and operate under individual names. If you have questions in relation to one of the research panels or communities in a specific country, you can contact them directly on the following e-mail addresses:
- In UK: British Research Panel: info@britishresearchpanel.co.uk
- In Denmark: Forskningspanelet: Info@forskningspanelet.dk
- In Germany: Forschungspanel: info@forschungspanel.de
- In France: La Communauté Française pour la Recherche en Santé (CFRS): info@cfrs.fr
- In Sweden: Forskningspanelen: info@forskningspanelen.se
- In Spain: La Comunidad de Investigación: info@comunidaddeinvestigacion.es
- In Italy: La Comunità di Ricerca Clinica: info@comunitadiricercaclinica.it
James Lind Care contact information
When we process your personal information, we act as data controller, as we are responsible for making sure that the processing is in accordance with data protection legislation such as EU GDPR.
If you need to contact us, you can reach us by phone, e-mail or post:
James Lind Care ApS
Langebrogade 6E, 2.
1411 København K
Company registration number: DK38885693
Phone: +45 31 41 40 82
E-Mail: rasmushjorth@jameslindcare.com
Data Protection Officer (DPO)
You may contact our Data Protection Officer (DPO), if you have specific questions regarding your data protection rights. The DPO can be contacted by e-mail at dpo@jameslindcare.com or by post using at the address listed above. Please mark the envelope ‘Data Protection Officer’.
What personal information do we process an
d for which purpose?
Based on your relation to us, we may process your personal information for different purposes. In the sections below, you can find specific information for each purpose.
- When you are a member of a Patient Community
Purpose
When you sign up for one of our Research Panels or Communities (see paragraph 2.1.2.2) we process your information with the main purpose of sending you information about and invitations to relevant clinical research projects.
What information do we collect and process?
When you sign up, we ask for general contact information and identifiers such as your name, age, location, e-mail and phone number.
Later you will receive one or more questionnaires asking for sensitive personal data, such as health information. This information is used to identify potential research projects that may be of relevance and interest to you, It also enables us to send you relevant news and information.
The legal basis of our processing
When you sign up, you consent to the processing of your personal data. The processing of general information such as name, age, location etc. is based on informed consent as per EU GDPR article 6-1-a. When we process sensitive personal data, this is based on explicit consent as per EU GDPR article 6-1-a as well as article 9-2-a.
You can withdraw your consent at any given time, at which point we will delete your information.
In rare occasions we might continue to process relevant information based on our legitimate interest to demonstrate compliance with national or EU legislation. If this is the case, you will be informed specifically about this.
How long will we keep your information?
In general, we will keep and process your information for as long as you remain a member of one of our patient communities and for as long as it is necessary for the purposes described in this Privacy Notice. We will delete your information if you withdraw your consent or if you are categorized as inactive.
To whom do we pass your information?
Your personal information will not be disclosed to any third parties without your prior consent. Only companies acting as our data processors may have access to your information and solely to process it under our explicit instruction.
Profiling
When you sign up, a membership profile will be generated. This profile will be built based on the answers you provide in our questionnaires. When we look for possible participants for clinical research projects, we will review your membership profile to see if you match the initial criteria.
- When you are contacted for possible participation in a specific medical research project
Purpose
If you are considered a possible participant in a specific medical research project, we will contact you by e-mail or phone to gather further information. Based on this additional information, you may be referred to a clinical research site conducting the medical research project. The dedicated staff at the clinical research site will make the necessary evaluations for your potential participation in the medical research project.
What information do we collect and process?
During the process of evaluation for a specific project, we will collect information about your health, medical treatment, and other information relevant for the project.
The legal basis of our processing
Initially we will contact you based on the consent you gave us when you signed up for one of our panels or communities, or the consent you gave when filling out a questionnaire based on an advertisement or other reference.
We process both normal and sensitive information about you, which is based on explicit consent as per GDPR article 6-1-a as well as article 9-2-a.
Before we share your personal information with any research sites, we will again ask for your explicit consent for the sharing of data.
You can withdraw your consent at any given time, at which point we will delete your information and remove you from the project.
Note, that if you have given consent for the sharing of your data with a research site and you withdraw your consent, then you must also contact the research site if you wish to withdraw your consent with them.
In rare occasions we might continue to process relevant information based on our legitimate interest to demonstrate compliance with national or EU legislation. If this is the case, you will be informed specifically about this.
How long will we keep your information?
Depending on the specific medical research project, we will keep your personal data for as long as it is considered necessary. Often your personal information will be anonymized or pseudonymized after 6 months.
To whom do we pass your information
If you are referred to a clinical research site as a potential participant for the research project, the collected sensitive personal data including your health information will be shared with the site.
Profiling and automated decisions
During the process of evaluating and selecting potential participants, a profile will be built based on the answers you give us. All decisions are made by people within James Lind Care, or by the research site and no decisions are automated.
- When you answer general surveys from us
Purpose
From time to time, we conduct general surveys to gather information about a specific topic relevant for our business or for medical research projects in general.
What information do we collect and process?
As the surveys can vary, so can the information we gather. Often, we will ask for general contact information and identifiers such as name, postal code, gender, etc., along with sensitive personal data regarding health, medical treatments etc.
The legal basis of our processing
Initially we will contact you based on the consent you gave us when you signed up for one of our panels or communities, or the consent you gave when filling out a questionnaire or a form based on an advertisement or other reference.
We process both general and sensitive personal data about you based on explicit consent as per GDPR article 6-1-a as well as article 9-2-a.
You can withdraw your consent at any given time, at which point we will delete your information and remove you from the project.
In rare occasions we might continue to process relevant information based on our legitimate interest to demonstrate compliance with national or EU legislation. If this is the case, you will be informed specifically about this.
How long will we keep your information?
Personal Data gathered for general surveys will be kept for as long as it is necessary for the project and will often be deleted (anonymized) within 6 months, as the findings will be aggregated in a report. Information about the specific duration will always be displayed together with the specific survey.
To whom do we pass your information
Information gathered in general surveys will not be shared with others, unless this is made explicitly clear in a specific survey.
Profiling and automated decisions:
No profiling and no automated decisions are carried out.
- When we use your information for marketing
Purpose
We publish news, case stories and the like on our websites, on social media and on other digital or printed media. In these publications, community members are sharing their personal stories, or their experiences related to their disease, treatment, or interaction with James Lind Care.
What information do we collect and process?
We often collect general contact information and identifiers such as name, country, city and age, along with photographs for the articles. We also collect sensitive personal data regarding health, medical treatment etc.
The legal basis of our processing:
We process both general and sensitive personal data about you based on explicit consent as per GDPR article 6-1-a as well as article 9-2-a.
You can withdraw your consent at any given time, at which point we will delete your information from the digital platforms. Any material already printed and handed out cannot be withdrawn.
In rare occasions, we might continue to process relevant information based on our legitimate interest to demonstrate compliance with national or EU legislation. If this is the case, you will be informed specifically about this.
How long will we keep your information?
In general, your information will be processed as long as the stories remain published on the digital platforms. Information will only be removed or deleted if you withdraw your consent.
To whom do we pass your information:
Information will be published on different digital media. In most cases, we remain in control of the data and can delete it upon withdrawal of consent. In some cases, stories may be picked up by the general news media, in which case we are no longer in control of your information.
Profiling and automated decisions:
No profiling and no automated decisions are carried out.
- When you visit our websites (Cookies)
Purpose
When you visit one of our websites, we will gather information about your visit and behavior for the purpose of doing statistics and improvements of our website. We may also share your information with third parties such as social media platforms, with the purpose of serving your personalized advertisement on those platforms.
What information do we collect and process?
Depending on what kind of data gathering you consent to, we may collect the following:
IP-address, website you came from, pages you visit, browser information, device information etc.
This information is gathered in a way which does not enable us to directly identify you as an individual.
The legal basis of our processing
When you enter one of our websites, you will be prompted to answer which cookies and data processing purposes you consent to. By giving your consent we may set cookies in accordance with the e-Privacy Directive. If personal data is processed, it is based on informed consent as per EU GDPR article 6-1-a.
You can withdraw your consent at any given time, by changing your answers in the cookie pop-up. A link to the cookie pop-up can be found on all of our websites by clicking the small “cookie icon”.
How long will we keep your information?
In general, we keep visitor information in our statistical systems for up to two years.
To whom do we pass your information?
If you consent for the purpose of marketing, our marketing partners and the social media platforms we use, are able to track your interactions with the website. At any given time, you can see the current marketing partners and social media platforms in the cookie information on the website.
Profiling
If you consent to marketing purposes, you should expect that our marketing partners and connected social media platforms will use your interactions with our website to build a profile on you. This profile will also be used for making automated decisions on which adds you may be presented for on social and other digital media.
- When you apply for a job
Purpose
When you apply for a job with James Lind Care, we will process your personal data with the purpose of determining whether or not you fit the profile for the specific job.
What information do we collect and process?
We will collect your general contact information, along with your resume and CV data, such as former jobs, education, qualifications etc. We do not require you to disclose social security numbers, health information or other sensitive data.
The legal basis of our processing
We process normal and non-sensitive information about you, based on our legitimate interest as per GDPR article 6-1-f.
How long will we keep your data?
We will keep your personal data for the duration of the recruitment process and generally until six months after the position has been filled.
To whom do we pass your information
If you have named references such as prior employers, we may contact these for reference, thereby disclosing your personal data.
Profiling and automated decisions
No profiling and no automated decisions are carried out.
- When you are a supplier or business partner
Purpose
For business purposes, we will make contact with the employees of suppliers, business partners etc. It is our natural purpose to keep and process the personal data of these employees.
What information do we collect and process?
We collect and process general contact information. We may also collect information related to our business cooperation.
The legal basis of our processing
We process normal and non-sensitive information about you, based on our legitimate interest as per GDPR article 6-1-f.
How long will we keep your information?
We will keep personal data for as long as we have an active cooperation or as long as the information is relevant for running our business.
To whom do we pass your information
We may share your information with other collaborators within our line of business.
Profiling and automated decisions
No profiling and no automated decisions are carried out.
We protect your data
At James Lind Care we are dedicated to the protection of your personal data, so that you can feel safe about our processing. It is important to us that your personal data is stored securely and confidentially. We have internal procedures for the collection, storage, deletion, updating and disclosure of personal data to comply with applicable data protection legislation at all times.
Your data protection rights
According to GDPR you have specific rights regarding your personal information. This section describes your rights and explains how to exercise those rights. You can exercise any of the following rights by contacting James Lind Care.
- Right to access your personal information
You may request access to the personal information we process along with information about where it comes from and what we use it for. You can obtain information about the period for which we store your data and about who receives data about you.
We will answer requests for access within 30 days.
- Right to rectification of your personal information
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.
- Right to be forgotten
You have the right to request that James Lind Care erase your personal information. If we process your personal information based on consent, we will erase your information without undue delay, however there may be situations where we process your information on another legal basis or have legitimate interest in keeping your information to exercise or defend legal claims.
- Right to restrict processing
If you believe that the information, we process about you is incorrect, or if you have objected to the use of the information, you may request that we restrict the use of the data to storage. Use will be restricted to storage only until the correctness of the data can be verified, or it can be checked whether our legitimate interests outweigh your interests.
- Right to object to processing
In certain circumstances, you have the right to object to the processing of your personal information. This for instance when the processing is based on our legitimate interest.
You also have the right to object to the use of your personal information for direct marketing purposes.
- Right to data portability
If we process information based on your consent and the data processing is automated, you have the right to request a copy of the data you have provided in a digital machine-readable format.
- Right to complain to the Data Protection Agency
If you are not satisfied with our processing of your information and if we have not been able to resolve any disputes, you have the right to complain to the Data Protection Agency in Denmark: “Datatilsynet”.
More information can be found on their website: www.datatilsynet.dk
You may also complain to the Data Protection Agency in the country where you reside.
You can also at any time contact our Data Protection Officer, who can explain how the legislation works. For contact information, see the top of this document.
Changes to this privacy notice
We may change or update this privacy notice on a regular basis. In case of a change, the “effective from” date at the top of this page will be amended.
If we make significant changes to how your personal data is processed, we will take reasonable steps to notify you.