Prostate Cancer UK Supporter Research Panel Community Panel Privacy Notice
Prostate Cancer UK Supporter Research Panel Online Community Privacy Notice
Last updated: July 2021
Who are we?
We are Prostate Cancer UK (“we” “our” “us”). You can see who our group members are by clicking on the link below:
What is our Privacy Commitment to you?
We respect your privacy and are committed to protecting your personal data. This privacy notice describes how we collect, use, share and protect personal data that you provide Prostate Cancer UK Supporter Research Panel (the “site”) when you become a community member and participate in our surveys and/or research studies (“surveys”). It also explains your privacy rights and how laws that are applicable to you may protect you.
This privacy notice explains your privacy rights and how laws that may be applicable to you may protect you and tells you:
- Who are we?
- What is our Privacy Commitment to you?
- What personal data do we collect about you and how do we use your personal data?
- Who do we share your personal data with?
- Who is the data controller?
- What are the legal bases we rely on when using your personal data?
- Do we transfer your personal data to other countries?
- What cookies do Toluna use on the site?
- What other tracking technologies do Toluna use?
- What is our winner’s policy?
- How do we protect your personal data?
- How long do we keep your data for?
- Children’s privacy
- Your rights
- How do you access your information; use the member services area and/or update, correct or delete your information?
- How do you opt out from your community membership?
- How long will you use my data for?
- How do you ask a question or make a complaint?
- Your other rights
- Changes to the privacy notice and your duty to inform us of changes
- Privacy contact details
What personal data do we collect about you and how do we use your personal data?
Being a Community Member
When you agree to become one of our community members and complete the registration form on the site, you are able to participate in our surveys. As part of your registration, you will provide us with your Identity data and Contact data and we will through your participation in the Surveys obtain, use and share certain other data about you, such as; Demographic/Profile data, Technical data and Pseudonymised data.
We use your Identity data and Contact data for:
- Contacting you for any reason connected with your community membership;
- Incentive fulfilment - when you earn incentive points through your participation in the surveys, the points are deposited into your account. When you wish to redeem them, we will use your Identity data and Contact data to send you your rewards.
- Sending you invitations for your participation in surveys - to ask you if you are interested in participating in our upcoming surveys. We may also make you aware via your online community membership account of surveys you may be suitable to participate in, based on our knowledge of your personal data.
- Understanding more about you and the insights you provide us – our platform provider (Toluna) will with your consent provide us with your Identity data and Contact data, so we can understand more about you.
We do not process Special Categories of personal data about you.
We use your Demographic/Profile data for matching you with appropriate surveys to see if you qualify for particular surveys and your birth date is automatically updated so that we may ensure we select individuals, based on their age as may be required for the relevant survey.
We use the personal data collected about you via the site to match and link with data we previously collected about you.
Public forums and blogs
The site offers publicly accessible blogs or community forums. You should be aware that any information you provide in these areas may be read, collected, and used by others who access them.
Personal testimonials of satisfied customers are displayed on the site in addition to other endorsements. With your consent, we may post such testimonials along with your first name and first letter of your surname. If you wish to update or delete your testimonial, you can contact us at firstname.lastname@example.org.
You should be aware that any personal data you choose to make public on the site, in the Community area (under a message on your wall, as an opinion, topic, battle, thumb it) can be read, collected, stored and/or used by other users and could be used to send you unsolicited messages. We strongly discourage you from disclosing any of your personal data in the community area that you may find on the site and in particular, we would never ask you to provide your Contact data or Identity data on a public community area as part of a survey. We cannot guarantee that third parties with whom you share your personal data via those community areas will keep them secure and confidential. Please be aware that we are not responsible for the personal data you choose to submit or make public. In addition, we are not responsible for the content you publicly post on the site that can be found via web-based search engines.
Categories of personal data we may process about you
- Identity data – name (includes first, last, maiden and married names), date of birth, marital status, gender, membership ID and username.
- Contact data – postal address, email address and telephone number.
- Special categories of personal data – ethnic/racial origin, health, genetics, political opinion, religion, sexual orientation and sex life and biometrics data. In this context “biometrics data” are data resulting from specific technical processing relating to the physical, physiological, or behavioural characteristics of a natural person, which allow or confirm the unique identification of that natural person, such as facial images or fingerprint data and used for ID purposes.
- Demographic/Profile data - interests, preferences, feedback and survey responses and including, but not limited to; age, marital status, gender, birthday, household size, income, education and employment status.
- Technical data includes internet protocol (IP) addresses, login data, browser type and version, time zone setting and location, browser plug-in types and versions, operating system and platform and other technology on the devices you use to access this website.
- “Pseudonymised data” is identifiable data as unique identifiers such as membership ID’s are used, however direct identifiers, such as; name and Contact data are removed.
Who do we share your personal data with?
We have appointed Toluna to host the site on its online platforms for us. Toluna help us to recruit online community members - like you and they build and manage the site and process all personal data we collect from you as part of your community membership. We require Toluna to respect the security and confidentiality of your personal data and to treat it in accordance with the law. We do not allow Toluna to use your personal data for their own purposes and only permit them to process your personal data for specified purposes and in accordance with our instructions.
Toluna’s has engaged Amazon Web Services (AWS) (located in Ireland) to host the Community platform and to provide back up services.
From time to time we may engage third parties to issue you with cheques or processing the delivery of your rewards and they will need to use your Identity data and Contact data for those purposes.
From time to time, Toluna may use third-party software for fraud, quality checking and validation purposes, including, but not limited to speeding,
Though we make every effort to preserve your privacy, we may be required to disclose your personal data in response to lawful requests by public authorities, including to meet national security or law enforcement requirements; or to comply with a subpoena or other legal process, when we believe in good faith that disclosure is necessary to protect our rights, to protect your safety or the safety of others, to investigate fraud or breaches of the site terms, or to respond to a government request.
Who is the data controller?
We, Prostate Cancer UK with whom you registered with as a community member are the controller and responsible for your personal data.
We have appointed a data protection officer (DPO) who is responsible for overseeing questions in relation to this privacy notice. If you have any questions about this privacy notice, including any requests to exercise your legal rights, please contact the DPO using the details set out below.
What are the legal bases we rely on when using your personal data?
The law on data protection in the EEA, Switzerland and the UK sets out a number of different reasons for which a company that is processing personal data may collect and process such personal data, including:
Consent – In certain cases, we collect and process your personal data with your consent e.g. when you participate in surveys.
Legitimate interest – In specific situations, we require your data to pursue our legitimate interests in a way which might reasonably be expected as part of running our business and which does not materially impact your rights, freedom or interests e.g. conducting customer satisfaction research by getting your feedback on our products and/or services.
Contractual obligations – In some circumstances, we may need to process your personal data to comply with a contractual obligation e.g. when we use your personal data to send you your rewards.
Legal compliance – If the law requires us to, we may need to collect and process your personal data in response to lawful requests by public authorities or if e.g. we believe in good faith that disclosure is necessary to protect our rights, to protect your safety or the safety of others, to investigate fraud or breaches of the site terms, or to respond to a government request.
Do we transfer your personal data to other countries?
From time to time your personal data is transferred and/or accessed from a Toluna company that is located in a different country. Toluna has entered into standard contractual clauses pre-approved by the European Commission (“SCC’s”) with the Toluna entities set out in the table below to ensure that Toluna USA provides adequate protection for the processing of personal data about individuals in who reside in the EEA, Switzerland and the UK.
|Toluna Office||Purposes||Mechanism for transfer under the GDPR|
| Toluna SAS
5, Avenue du Château
|Community management||Member of the EU|
| Toluna USA Inc.,
21 River Road,
Hosting and back up and community management support
| Toluna Canada Ltd
10, Sheppard Ave. East,
|Community management||Adequate country|
| Toluna Romania Srl
|Support and maintenance||Member of the EU|
| Toluna India Pvt Limited
Unitech Trade Center,
1st Floor, Sushant Lok
Phase-1 Gurgaon, 1220022,
|Support and Maintenance||EU SCC’s|
| Toluna Technology Limited
25 MATAM Tech Centre,
|Provision of analytics services (incl, TolunaAnalytics™)||Adequate country|
Toluna USA Inc., - EU-U.S. and Swiss-US Privacy Shield Framework
All data that Toluna uses on the Community are accessed by Toluna USA for the purposes set out in the table above. In addition to entering into SCC’s, Toluna USA has self-certified to the EU-US and Swiss-US Privacy Shield Framework administered by the US Department of Commerce ("Privacy Shield"). Toluna USA is responsible for the processing of personal data it receives, under the Privacy Shield as well as the SCC’s and subsequently transfers to a third party acting as an agent on its behalf for the purposes of providing back up services to ensure the security of your personal data. Toluna USA adheres to the Privacy Shield Principles of Notice, Choice, Accountability for Onward Transfer, Security, Data Integrity and Purpose Limitation, Access, and Recourse, Enforcement, and Liability. If there is any conflict between the terms of this privacy notice, the Privacy Shield Principles and the SCC’s, the SCC’s shall govern.
For the purposes of enforcing compliance with the Privacy Shield, Toluna is subject to the investigatory and enforcement authority of the US Federal Trade Commission. For more information about the Privacy Shield, see the US Department of Commerce's Privacy Shield website located at https://www.privacyshield.gov. To review Toluna’s representation on the Privacy Shield list, see the US Department of Commerce's Privacy Shield self-certification list located at https://www.privacyshield.gov/list.
What Cookies do Toluna use on the site?
What other Tracking Technologies do Toluna use?
Server log files: Toluna may collect Internet protocol (IP) addresses, browser type, internet service provider (ISP), referring/exit pages, operating system, date/time stamp, and/or clickstream data. This Technical data may be combined with other information collected about you for the purposes of improving our services, site functionality and collecting analytical data.
Fingerprint technologies: In general, digital Fingerprinting technologies assign a unique identifier or "Machine-ID" to a user's computer to identify and track your device (“Technology”). The Technology will analyse publicly available information and data obtained from your computer's web browser and from other publicly available data points, including the technical settings of your computer, the characteristics of your computer, and its IP Address, to create a unique identifier, which will be assigned to your device. Toluna uses the Technology for quality control, validation, and fraud detection and prevention purposes, including assisting us in ensuring the integrity of survey results. Appropriate technical and operational processes and procedures will be put in place to ensure that the Technology is safe, secure and does not cause undue privacy or data security risks and the Technology will be used and distributed in a professional and ethical manner and in accordance with (a) this privacy notice, (b) any other statements and/or disclosures made to you as a member of the community and (c) applicable laws and market research codes of practice. In the event any unethical conduct is discovered in connection with the use of the Technology, or that the Technology is being used in a manner that is inconsistent with privacy notice, immediate action will be taken to prohibit such unethical conduct and to ensure the proper administration of the Technology.
What is our winner’s policy?
Currently the Prostate Cancer UK Supporter Research Panel does not offer a reward scheme.
How do we protect your personal data?
We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access to your personal data to those employees, agents, contractors and other third parties who have a business need to know. They will only process your personal data in accordance with our instructions and they are subject to a duty of confidentiality.
We have put in place procedures to deal with any suspected personal data breach and will notify you and any applicable regulator or supervisory authority of a breach where we are legally required to do so.
How long do we keep your data for?
We will only retain your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements.
To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.
In some circumstances you can ask us to delete your data: see the section entitled Your rights below for further information.
As the results of the surveys and other aggregated or Pseudonymised data are used for research and/or statistical purposes, we and other third parties may use this information in accordance with the terms indefinitely without further notice to you.
From time to time we may offer visitors the ability to voluntarily link to other sites. Toluna does not review and is not responsible for, the content or effect of the privacy policies of these sites.
Toluna will not knowingly collect any information online from any child under the age 16 without permission from his/her parents, legal guardian or an adult responsible for the care of the child. We comply with the EU “Safer Internet programme”, the General Data Protection Regulation and the ESOMAR guidelines in relation to online surveys concerning children and young people.
Your rightsHow do you access your information; use the member services area and/or update, correct or delete your information?
Upon request, we will provide you with information about what personal data we may hold about you. You may access, correct, or request deletion of your personal data, or terminate your membership by logging into your Community Account. By following the appropriate directions, your information should be automatically updated in our database. For these purposes, and if you are unable to correct your personal data yourself via your Community Account you may write to us at the postal address found at the end of this Privacy notice, or contact us by email at email@example.com. We will respond to all requests within a reasonable timeframe.
How do you opt out from your community membership?
If you choose to end your membership with the Community or require us to cease processing your personal data, you may discontinue your membership by going to “Account” and selecting “Unsubscribe Options” in the footer. By following the appropriate directions, your record will be marked as "do not contact", and you will no longer receive invites to participate in future Surveys from Toluna. In addition, you will forfeit any incentive balance that has not been requested as of the time you opt out. In most cases it will take 2 to 3 days to process this change, but please allow up to two full weeks for your status to be finalised. Please note that you may continue to receive communications during this short period after changing your preferences while our systems are fully updated.
You may also send an email directly to firstname.lastname@example.org requesting to be removed. Email links are provided on the site so that you may contact us directly with any questions or concerns you may have. Each email we receive is read and responded to individually; please allow two to three business days for us to get back to you.
How long will you use my data for?
If you decide to terminate your membership, we will no longer use your personal data to contact you, but in accordance with our backup procedures, we will retain your personal data until your personal data are eventually destroyed in accordance with our How long do you keep my data for? and we will continue to employ the security procedures and technologies to keep your personal data safe.
How do you ask a question or make a complaint?
You can direct any questions or complaints about the use or disclosure of your personal data to our Privacy Contact We will investigate and attempt to resolve any complaints or disputes regarding the use or disclosure of your personal data within 30 days of receiving your complaint.
If you have an unresolved privacy or data use concern that we have not addressed satisfactorily, then you may take your complaint to a data protection regulator.
- If you are in the EEA or Switzerland, a list of National Data Protection Authorities can be found here: http://ec.europa.eu/justice/data-protection/bodies/authorities/index_en.htm.
- If you are in the UK, you may make a complaint to the Information Commissioners Office at https://ico.org.uk/make-a-complaint/.
We would, however, appreciate the chance to deal with your concerns before you approach the data protection regulator so please contact us in the first instance.
Your other rights
- Request access to your personal data and we may conduct ID checks before we can respond to your request.
- Have your personal data erased, corrected or restricted if it is inaccurate or requires updating. You may also have the right under certain circumstances to request deletion of your personal data; however, this is not always possible due to legal requirements and other obligations and factors. You can update your account information via your Account or by contacting us at the address given below.
- Have your personal data transferred to you or to a third party. We will provide to you, or a third party you have chosen, your personal data in a structured, commonly used, machine-readable format. Note that this right only applies to automated information which you initially provided consent for us to use or where we used the information to perform a contract with you.
If you wish to exercise any of the rights set out above, please make such request via your online Account.
Changes to the privacy notice and your duty to inform us of changes
If we decide to change our privacy notice, we will post those changes to this privacy statement on the homepage, or other places we deem appropriate so that you are aware of what information we collect, how we use it, and under what circumstances, if any, we disclose it.
We reserve the right to modify this privacy statement at any time, so please review it frequently. If we make material changes to this policy, we will notify you here, by email, or by means of a notice on our home page prior to the change becoming effective.
It is important that the personal data we hold about you is accurate and current. Please keep your Account details updated if your personal data changes during your relationship with us.
Privacy contact details
Email our Data Protection Officer at email@example.com.
Prostate Cancer UK
53 Tooley Street
London SE1 2QN